Some previous publications on the history of cystic fibrosis
History of the Cystic Fibrosis (Research) Trust to 1984
History of the European Cystic Fibrosis Society
Index of authors’ images that are included in the text; these are also listed in the separate “Author image index”section
Some previous publications on the history of cystic fibrosis
1972 Cystic Fibrosis. A Comprehensive Bibliography of the Medical Literature 1813-1972. US Department of Health Education and Welfare. National Institutes of Health. Complied and edited by Douglas S Holsclaw and Anne Lloyd Topham.
Fig 1. Douglas Holsclaw
Details of over 5000 references on CF published between 1813 and 1972.
This must have been a massive undertaking in the pre-computer and pre-internet era. The entries are in alphabetical order of first author and there are also useful separate subject and author indices.
By 2013 there were over 37,000 references to cystic fibrosis on the medical reference databases; by the end of 2019 the number of references to cystic fibrosis on the PubMed database has risen to 51,991.
I was fortunate to discuss this major undertaking with Douglas Holsclaw when I obtained Fig.1.
1981 1000 years of Cystic Fibrosis. Collected Papers. Presented at an International Conference on Cystic Fibrosis at the University of Minnesota, may 7-7-, 1981. Warren J Warwick Ed. Published by the University of Minnesota.
Fig 2. Warren Warwick
Warren Warwick (figure 2) organised this “one off” meeting where many of the leading international CF experts, past and present, presented a fascinating collection of papers on their work over the previous years. It is a wonderful collection of papers presented by virtually everyone with a significant involvement in CF treatment or research up to that time. Many had been involved with CF care or research since the first recognitioon of the condition in 1938 by Dorothy Andersen.
Presenters at the meeting included Warren Warwick, Guilo J Barbero, Paul di Sant’Agnese, Jack Lieberman, LeRoy Matthews, Lewis Gibson, Archie Norman, Lucas Kulczycki, Alexander Spock, Jean Feigelson, Jean Navarro, Niels Hoiby, Winge Flensborg, Peter Sciotz, Ettore Rossi, Richard Kraemer, Lynne Reid, KF Kerrebijn, Nancy Huang, Gianni Mastella, Ulrich Stephan, William Waring, George Polgar, Bettina Hillman, Carl Doershuk, Harry Shwachman.
1984 HISTORY OF THE CYSTIC FIBROSIS (RESEARCH) TRUST
A lecture by Sir Robert Johnson QC delivered at the CF Research Trust’s 20th Anniversary Weekend, Brighton, June 1984
Fig 3. Sir Robert Johnson
Cystic fibrosis itself has, I suppose, a history as old as man. Until it’s eventual recognition by the medical world, fatalities from CF were attributed to other causes so that the number of people actually suffering from CF must be a matter of speculation. On the one hand, lack of diagnosis and therefore proper treatment must have meant that there were few living people with cystic fibrosis. On the other hand the number of carriers must have expanded unabated.
To put our Trust and the progress it has made into a historical perspective we must, I think, pause to remember that for many centuries cystic fibrosis existed but as a totally unrecognised condition. We all know of the Hungarian saying of many years ago – “soon will die the child whose brow is salty to the kiss” – I recollect seeing Ron’s (Ron Tucker) slide of that actually attributed to Rocholz, I think in 1857. The first report of cystic fibrosis in a scientific paper was in 1936 in the paper by Dr Guido Fanconi entitled, it may be noted Mr. Chairman, Cystic Fibrosis of the Pancreas. It is again a measure of that timescale in which I am recounting this history that is within my own, if not within your lifetime Mr Chairman. As that title implies the disorder was thought initially to relate only to the digestive system. The involvement of the lungs, to which our major problems seem now to relate, was not then recognised.
Fig 4. Dorothy Andersen
In 1938 there appeared the first comprehensive account of CF as a separate disorder based on work at the Babies Hospital at the Columbia Presbyterian Medical Center in New York City and written by Dr. Dorothy Andersen (figure 4), a name we all know, but significantly a pathologist. The following year there occurred the first diagnosis of a living CF patient. The diagnosis, obviously difficult for the doctor and uncomfortable for the patient, was achieved by the measurement of the pancreatic enzymes in the duodenal juice.
Fig 5. Sydney Farber
By 1944 however, it had become clear to the few doctors who had the knowledge, that CF was not confined only to the pancreas but was a widespread defect affecting other exocrine, that is to say secreting, glands. Cystic fibrosis of the pancreas was therefore a misnomer and a new name had to be invented. Dr Sydney Farber (figure 5), of Boston Massachusetts, named it Mucoviscidosis. All of us recognise in that word, the word mucus, but some of the more erudite will have recognised in it the Latin “viscidus” meaning sticky as well as the Greek “osis” meaning condition; condition of sticky mucus. To this day the International CF Association is called the ICFMA, the International Cystic Fibrosis (Mucoviscidosis) Association because that’s what cystic fibrosis is called in some other countries and you will find mucoviscidosis is defined still as Fibrocystic Disease of the Pancreas. It was then seen that the mucus of the respiratory tract was affected. The realisation roughly coincided fortunately with the development in the late 1940s of the early antibiotics which had evolved since the discovery of penicillin by Sir Alexander Fleming in 1929, working in that small second floor room in that gatehouse building at St Mary’s Hospital, Paddington where Professor Williamson is now carrying out important work for us. Fleming discovered penicillin but it wasn’t until 1941 that it became available for practical use.
Fig 6. Paul di Sant’Agnese
In 1953, taking my chronology a stage further, an important step forward occurred in relation to CF in the detection of the CF defect in the sweat gland. This discovery occurred following a heat wave in the United States when it was observed that CF children were suffering heat prostration due to heavy salt loss. The discovery was made by Dr. Paul di Sant’Agnese (figure 6) – a doctor still alive (in 1984) who one hopes we will be seeing at this Congress next week. That was at the Babies Hospital in New York, again. That important discovery led eventually to the development of the sweat test.
In 1956, in the United States, they created their Cystic Fibrosis Foundation which in it’s early years made research grants to researchers whose names are household names in the world of cystic fibrosis – Dr Harry Shwachman (figure 7), Dr Paul di Sant’Agnese and Dr Dorothy Andersen. In 1959, ladies and gentlemen, only in 1959 there was introduced the ionisation technique (the Gibson and Cooke pilocarpine iontophoresis method of sweat stimulation and collection) which forms the basis of the sweat test as we know it and a major tool in the diagnosis of cystic fibrosis.
Fig 7. Archie Norman
It is only now Mr Chairman, at this stage in my chronology, that I can usefully turn your attention to the evolution of CF work in the United Kingdom. The fact is that until then there had been little of a coordinated nature to merit inclusion in my history.True there were individual doctors, Dr Norman over there (figure 7) to name one as an example, who were all working in developing ways of managing the patients better, but the general picture here was of ignorance and distress unmitigated by hope or practical effective action.
Until 1964 there was no formal organisation in the United Kingdom of any kind for the support or coordination of CF research. Work was going on but it was sparse and those involved were isolated and facing the problems of any scientific pioneer. As to the organisation of parents there is only one of which I am aware. It was based in Somerset and consisted of a body of parents who had infrequent meetings and kept in touch by means of a duplicated newsletter. The meetings and the newsletter seemed to me to be largely devoted to the exchange of emotive and dismal family news, and in my view of it at the time, of little benefit to the members. Perhaps for this reason the group had little momentum and it suffered the additional handicap of being regarded by the medical profession as detrimental to the families involved. Certainly it gave families the feeling that they were not alone, but there was no hope and nothing practical.
At the time of the creation of our charity, I recall attempts to absorb the Somerset group in the Chest and Heart Association and to make that the main CF organisation in the United Kingdom, but fortunately that failed. I say fortunately because that charity would have been concerned with too wide a range of disabilities to give adequate emphasis to Cystic Fibrosis; I remember this was a great source of anxiety in the early years until the matter was resolved. What CF did not need was fragmentation amongst a number of competing groups.
The situation of young parents facing a diagnosis of CF and trying to adjust to its implications will never be easy. However, if one compares the position now with the position when our Trust was founded one has a useful measure of the value of the contribution which the Trust has made in this area. Diagnosis will probably always be occasionally missed or delayed. In those days, missed diagnosis and late diagnosis seemed to be the order of the day. Scarcely any general practitioners had knowledge of cystic fibrosis and such indeed, with respect to them, seemed to be the case even with some consultants. We cannot yet claim total elimination of professional ignorance but now it is very much the exception. The promotion that is necessary for fundraising has contributed to that in a way coupled with the present massive research effort which is often seen to be reflected in the medical press.
Fig 9. Percy Lovely
Fig 8. John Panchaud
For the parents too, there is now available a range of information in understandable form which explains the meaning and significance of the diagnosis. None of that, I can tell you from my own experience, was available in former days. Further more, nowadays at our Groups and Branches there is available, in a thoroughly responsible way, advice and guidance from other parents. The Executive Committee is at the moment embarked on a scheme for some formal training in this voluntary counselling which is such an important part of the work of the Group and Branch Officers. But to revert to my history the picture I want to give you of the situation of a parent in the 1950s and the early 1960s is one of total hopelessness and despair. There was however one parent who was not content to wait passively for the inevitable. That parent as you know was John Panchaud (figure 8). His daughter Caroline had been diagnosed as having cystic fibrosis. John Panchaud’s father-in-law was a man called Percy Lovely (figure 9), a man highly respected in the City of London and a member of the Common Council.
At this time the Chairman of the National Dock Labour Board was Lord Crook who lived in Carshalton. In 1963 Lord Crook and the National Dock Labour Board gave a cocktail party at the Board’s Headquarters on the Albert Embankment in London to which Lord Crook invited a friend and neighbour from Carshalton, someone called David Lawson.
Fig 11. David Lawson
Fig 10. Lord Crook
David Lawson (figure 11) was a paediatrician at Queen Mary’s Children’s Hospital in Carshalton and himself a CF parent. Among the other guests, at what was a City function for business dignitaries, were, by chance, Mr and Mrs Percy Lovely. In the course of the party Dr Lawson espied Mrs Lovely. She was apparently a lady of some elegance wearing on this occasion a particularly edible hat! Having attracted, so it seems, the attention of this young Dr Lawson, and finding that he was a doctor, she poured out her heart to him about the problem her grand-daughter Caroline. It was left that she would get her son-in-law John Panchaud to phone David Lawson to arrange a meeting. Mr. Chairman, it is in that cocktail party, in the unlikely setting of the National Dock Labour Board Headquarters in London, that one has the origin of the Cystic Fibrosis Research Trust.
The consequence was that John Panchaud went to see Dr Lawson and together they evolve a plan. David Lawson’s first suggestion was that they should set up a Medical or Scientific Committee. John Panchaud proposed this should include David Lawson and a physician who was looking after Caroline at Great Ormond Street – Dr Archie Norman. But who else?
Fig 12. Cedric Carter
Fig 13. Winifred Young
Eventually Dr Lawson became Chairman of the Steering Committee. It included Dr. Norman and the late Dr. Cedric Carter (figure 12) the famous geneticist, the late Dr. Winifred Young (figure 13) of the Queen Elizabeth Children’s Hospital in Hackney – one of the early pioneers in the care of CF children and Dr. Lynn Reid (figure 14) of the Brompton Hospita, now a professor in the United States. A short time later they were joined by Dr. John Batten another physician from the Brompton who, as you know, is now the head of the Medical Household of Her Majesty the Queen.
In 1963 John Panchaud had his solicitor draw up the necessary legal documents for the formal creation of the charity. One of the first Trustees was Mr. Percy Lovely and as a result of his and John Panchaud’s contacts in the City they got together a Board of Trustees including as originals Mr. Joseph Levy (figure 16)and Lord Crook. Others were Lord Bossom and other prominent figures in the City of London. The inaugural meeting was held in February 1964. I have here the minutes. The date is the 20th February 1964 at 3.30pm in the Mansion House in the City of London under the auspices of the then Lord Mayor, Sir James Harman.
Fig 15. John Batten
Fig 14. Lynne Reid
The Trust organisation in those days consisted of John Panchaud’s own secretary, Eileen Denham, who spent part of his and quite a bit of her own time in the affairs of the Trust. The premises were John Panchaud’s office in the Haymarket. The prime movers on the fund raising side were John Panchaud himself, Percy Lovely and Joseph Levy. They set about the seemingly impossible task of raising funds for researching into something of which scarcely anyone had heard. David Lawson and his committee set about the allocation of the funds and giving general advice. One of these early minutes that I’ve read records that because the Medical Steering Committee was putting forward such a wide ranging programme of research, it would be necessary for the Trustees to now raise £10,000 per year. One sees from that the measure of the progress we’ve made.
At first the organisation was limited to the raising of funds by the individual Trustees. However,it gradually became clear that parents had to be involved. John Panchaud had always been keen to enlist their help and I think perhaps the initial delay or inertia in
Fig 16 Joseph Levy
enlisting the help of parents came from the experience the doctors had had from parents groups. The doctors were reluctant to encourage the organisation of parents into what might prove, once again, to be little more than gatherings of the emotional, the bitter and frustrated. I think there was an increasing realisation that there would be parents groups and it was felt better to take the initiative and organise them in a proper way rather than leave them to developing in a random and negative fashion. I think too that it was realised that if research was to be effective the fundraising base of the organisation needed to be broadened and the hope was that this could be done in a way that was beneficial to the cause without detriment to the families.
Here the initiative was taken by Dr Norman. He selected one of the CF mothers (Linda Johnson – please see addendum) in his clinic at Great Ormond Street to organise the first group in London. I say in London but the existence of that first group acted as a magnet and parents wrote and telephoned and came to meetings from all over the United Kingdom. There was a small group at the time I recollect in Sheffield led by Mr Albert Clover and almost simultaneously there were groups starting at Aberystwyth – Mrs Jones I recollect and Dr Glencross in Glasgow.
Suddenly there was hope. Suddenly, there was something one could do to fight back. A chance even to win. I look back on those days with great emotion. For those of us who were involved those days still mark a turning pointing in our lives, when hope arose and work began. After a depressing history of chaos and despair one man had been instrumental in bringing together a group of people from totally diverse backgrounds and uniting them into what was truly a crusade. A crusade to do something about it. Of course each of those I have mentioned was a person of talent and dedication in their own field, but without the catalyst of John Panchaud, it is I think doubtful that we would be here today celebrating the 20th Anniversary of a lively and successful charity. There would have been an organisation but not one of this calibre.
The John Panchaud Medal of the CF Trust
Of our founders some are still with us, others have passed on. Lord Crook as you know is our President, 83, and because of ill health not able to be with us this week. Joseph Levy (figure 16) is the much respected, and I wish to say much loved, Chairman of our Council. Dr Norman is just coming to the end of his term as Chairman of the Scientific and Medical Advisory Committee. Mr Lovely has died and so has John Panchaud. He died in 1974 when he was 58. His memory lives on. We have inaugurated, as you know a John Panchaud Medal (figure) which is to be awarded on rare occasions to those who have given outstanding service to the Trust. John’s widow is I hope to be at this Congress. Caroline is married and living in Switzerland.
Dr Lawson continued for many years his enormous endeavour on the research side. He was, as you know, Chairman of our Medical Committee and again of the Medical and Scientific Committee of the international organisation and has been, in many ways, on the medical side one of the major figures in the International CF Organisation but most importantly, has come out of his supposed retirement to play a major part in the organisation of the Scientific Programme of this Conference. I myself was a minor figure on the Organising Committee and I bear witness to the enormous effort that David Lawson and every member of the Committee put into the congress that we hope is going to be a great success this week.
To return to my history, after the formation of the Trust and that first parents group, the enthusiasm and the pace was colossal. Judged by today’s figures the funds seem small but they were hard earned and they were well spent, and they primed the pump. As early as Christmas 1964, the Trust was selling its own Christmas cards. I remember a meeting at the house of Dr Smith near Hangar Lane in West London, to choose a range of cards. The meeting I recall was much too large for the purpose and there was no consensus but somehow cards were chosen and the name of Cystic Fibrosis began to appear on other peoples’ mantelpieces. Dr Smith himself is worth a mention. He worked I think for the Wellcome Foundation doing research into asthma. His CF daughter was a source of wonder to the rest of us. She was, believe it or not, taking O levels. At that time when the expectation of life of our children was 3 or 4 years, here was a sign of hope if ever there was one. When she went to university I remember thinking to myself that surely she couldn’t have Cystic Fibrosis at all. There must have been a misdiagnosis, but such, ladies and gentlemen, was the situation in which we parents were in those early days.
Fig 17. Ron Tucker
No history of this Trust, however brief, could be written without mention of the services of Ron Tucker (figure 17). He was born on the 29th June so his birthday, his 65th in fact, is in 3 weeks time, when he will retire. Ron had a proud war service, he was wounded at Dunkirk, he went with the Commandos on the Dieppe raid and he was mentioned in dispatches. Before the war and during the war he became interested in youth work and when he left the army became full time organiser of boys’ clubs in Lancashire and Cheshire. By 1964 he was in London as Organising Secretary of the Keystone Cops, an organisation made up of famous and influential people who raised money for boys clubs. In 1965 the time had already come when the Cystic Fibrosis Trust needed, although it could scarcely afford, a full time executive. Advertisements were placed and interviews arranged. An interviewing panel was selected of those whose judgement in these matters could, so it was hoped, be relied on to select an appropriate candidate. I suspect, although I am not sure, that it was because of Joe Levy’s support of the boys clubs movement, that Ron Tucker was asked to be one of the pa
The interviews were concluded, the panel was unanimous. There had been no suitable candidate. The whole operation it seemed had been in vain. As the meeting broke up in an atmosphere of some gloom and disappointment, a panel member, addressing himself to Ron Tucker, said “Why don’t you do it?” Whether the remark was a flippant attempt at a joke to dispel the gloom or was a serious enquiry, I cannot relate. However, it was in that casual remark that there came to the service of Cystic Fibrosis, the life of Ron Tucker, to whose dedication and enthusiasm this Congress and our presence here today is modest tribute. This is not the occasion for a definitive account of the contribution made by Ron Tucker. We all of us know the enormous expansion in our organisation, the number of branches formed, the money raised, the families helped, almost single-handedly by Ron Tucker.
Fig 18. HRH Princess Alexandra with HRH Prince Charles – the present Patron
I want too, in my history, to mention the contribution made by Her Royal Highness Princess Alexandra (figure 18) . She takes a genuine and helpful interest in our endeavours but, particularly for the purpose of my history, I want to remind you that she became our Patron very early in the life of this charity, in 1968 at a time when this charity was struggling for recognition. Her granting of her patronage to us gave us a status which helped us very considerably. (Prince Charles (figure 18) succeeded Princess Alexandra as Patron in 2014).
I have already mentioned the international body. There had been some initial earlier contact between doctors on an international basis initiated I think by Dr. Paul di Sant’Agnese, involving in the UK significantly Dr Norman and Dr Lawson who were recognised as leaders of the UK medical effort. The first Congress of the ICF(M)A was held in Paris in March 1965. The practice has since become to hold such Congresses every 4 years but there were four earlier ones in the USA which were closer together in time and the Paris meeting was called the fifth; the last one in 1980 was in Toronto and the one in Brighton this week is the Ninth.
This is not the first International Congress to be held in England. Again, it is a measure of the progress that was made and one must add the esteem in which our UK researchers were held by the international medical and scientific community. As early as 1969 the International Congress was held in England. The funds available to the executive committee, the resources available to it were limited. We were asked to underwrite a pretty substantial project in terms both of organisation and finance, but everyone recognised the enormous benefit that can flow from bringing together in one place CF researchers from all over the world. We took over one of the Cambridge colleges, Churchill College, so that the visiting scientists and doctors were all accommodated under one roof. The format of the conference has become the pattern for subsequent international medical and scientific gatherings. That conference proved, I think, to be one of the most successful of the international conferences. Let us hope that this Congress is another such success and that the information and ideas that are exchanged and talked about here will speed the ambition of us all to find improved techniques of clinical management and to identify the basic defect.
In this account of the history of the Trust, I have passed over the intervening years and the expansion, the successes, and the failures too, that we have experienced in these past 20 years. My endeavour has been to record for you, who do not know the starkness of the contrast that exists between the state of things now and when we started. Progress can never be fast enough for us who have become involved but the record of this organisation is, in my judgement of it, truly worthy of praise.
I leave you then with two cautionary observations. The first is that maybe seeing the massive attendance at this Congress of researchers from all over the world, we may be tempted to the belief that efforts can be relaxed and the research left safely to those in perhaps more affluent countries. One thinks for example of the United States. If so you would be badly wrong. The research contribution made by the United Kingdom Trust is of the very greatest possible importance in the context of international research. As I see it, from my involvement in the Trust, the work done by our researchers, and I include those in England and also Wales, Scotland and Northern Ireland, is regarded as of the very highest quality. Thanks no doubt to those involved but largely I think to painstaking and I would add time consuming care that is given on a voluntary basis by the Members of our Scientific and Medical Advisory Committee to ensure that those projects that are supported by our funds are of sufficient scientific and clinical merit.
If however I may put the matter in terms of not only technical excellence but of hard cash, the following figures may interest you. In the United States, obviously by far the largest member of the international CF community, the total annual sum raised is about 17 million dollars, about 12 million pounds sterling, of which only about one pound out of 12 is spent on research. The reason is that, in the absence of a universal health service such as is available in this country, our US sister body has to devote much of it’s resources to the support of the CF patients and families. You will recognise the importance of the UK research contribution which is the product of our efforts, when you compare that figure of 1 million pounds spent on research in the United States with the figure, not much less, of £700,000 odd spent in the United Kingdom. No doubt some allowance must be made in comparing those figures for the fact that because of higher costs a million pounds buys much less research in the United states than it would in the United Kingdom. So we cannot leave it to others.
My other cautionary observation related to matters nearer home. Under the guidance and, as we all know, exhortation of Ron Tucker the income of the UK Cystic Fibrosis Research Trust has risen progressively over the years. Only once in our 20 years has there been no increase. Usually the sum raised by our groups and branches, which is as you know the major source of income, has increased by 10 to 20% each year. Now Ron Tucker has gone. His successor Charles Spottiswoode has our total confidence and I know he will have our strong support. However, he cannot have instantaneously the same intimate knowledge of our families and of local as well as general CF circumstances. We all know that in the 18 years that he was our Executive Director Ron Tucker developed a close attachment with us all, individual and collectively and with our supporters. It is I believe unavoidable that some of the value of that special relationship will be lost to us with the changeover to a new Executive Director. So I say this. We must all rally to our new Director and give him the extra support that is necessary to sustain our research efforts in this period of transition.
In concluding this history of the Cystic Fibrosis Research Trust therefore, I record my belief that we are potentially in a period where our support could slacken and our income drop. Equally I record my strong conviction that when someone comes to recount the history of the next 20 years it will be found that our membership recognised the possibility a slackening of effort and responded with added vigour. I believe that under the leadership of Charles Spottiswoode we will go on progressing in the way and at the rate we have done in the past and I for one, and I know the members of the Executive Committee have every confidence, that that will be so.
It is my belief too that in our research into improved clinical management and the search for the basic defect spectacular development is imminent After our special history we must not falter now. This Trust, Mr Chairman, has most certainly won its laurels. We who work for it must not rest upon them!
Addendum (Jim Littlewood 2018)
As parents of two children with Cystic Fibrosis, Robert and Linda Johnson were the parents involved in forming the first CF Parents Support Group in London and South East England in 1963, even before the CF Research Trust was officially formed in 1964. In this they were encouraged by Dr Archie Norman whose paediatric clinic their children attended at the Hospital for Sick Children Great Ormond Street in London. Linda and Robert have been continuously involved in one role or another both in the UK and internationally making a major and unrivalled contribution to the care and outlook of people with CF for 50 years. For their contribution to advancing the cause of Cystic Fibrosis both Robert and Linda were awarded Panchaud Medals of the CF Trust – Linda in 1983 and Robert in 2005.
1989 Dodge JA. Cystic fibrosis in Wales. Welsh Paed J 1989; 1:4-6. (www.welshpaediatrics.org.uk/cystic) Full text on the web.
A brief account of paediatric developments in Wales by Professor John Dodge both in terms of clinical care and also mentioning the research carried out there.
1990 Kulczycki LL. Five decades of cystic fibrosis (1938-1988). Acta Universitas Carolinae Medica 1990; 36:7-12.
Fig 19. Lucas Kulczycki celebrating his 100th birthday with Drs. David Nelson and Joseph Bellanti in 2011
A brief outline of recent history as seen by Dr Lucas Kulczycki (figure 19) who worked closely with Harry Shwachman in Boston from 1955 to 1970 until he moved to Georgetown. For many years Lucas Kulczycki was a leading figure in the CF world and published widely on the subject.
“Dr. K,” as he is affectionately known by his colleagues and patients, escaped Poland as the Nazi’s marched through in September 1939 and literally walked over the Carpathian Mountains into Hungary, then to France and eventually across the English Channel to Liverpool and then to Scotland where he received his medical degree from the University of Edinburgh. Dr. Kulczycki then emigrated to Canada to continue his medical studies and then went to Boston where he started to specialize in treating children with a severe respiratory disease known as cystic fibrosis. While in Boston, in 1958, he worked with Dr. Harry Shwachman to devise the Shwachman-Kulczycki Score for determining the severity of a patient’s cystic fibrosis. The Shwachman-Kulczycki Score is a tool still used by medical professionals today. In 1962, Dr. Kulczycki came to Washington, DC where he served as the director of the Cystic Fibrosis Center and a Professor of Pediatrics at Georgetown University School of Medicine. (information and image from the MedStar Georgetown University Hospital website with permission)
Fig 20. Maurice Super
1992 Super M. Milestones in cystic fibrosis. In; Warner JO, editor. Cystic Fibrosis. British Medical Bulletin 1992; 4:717-737.
Maurice Super (figure 20) wrote a short account of the history of CF which has a strong emphasis towards the genetic advances as he was both a paediatrician and also a geneticist in Manchester, UK.
Fig 21. Margaret Mearns
1993 Mearns MB. Cystic Fibrosis: the First 50 Years. A review of the clinical problems and their management. In: Dodge JA, Brock DJH, Widdicombe JH, editors. Cystic Fibrosis – Current topics. Vol I. Chichester: John Wiley and Sons, 1993: 217-250.
An account of the treatment of cystic fibrosis by Margaret Mearns,(figure 21) a UK paediatrician of great experience and one of the few UK paediatricians who was closely involved with CF for many years from the Fifties, first working with Winifred Young and then as Consultant Paediatrician in charge of the Cystic Fibrosis Clinic at the Queen Elizabeth Hospital for Children, Hackney, London.
Fig 22. Michael Welsh
1998 Welsh MJ, Ramsey BW. Research on cystic fibrosis: a journey from the Heart House. Am J Respir CritCare Med 1998; 157 Suppl: S148-S154.[PubMed]
A review of research in CF by Michael Welsh (figure 22) , one of the leading US researchers in the field, tracing the “pathway of discovery leading to understanding and cure of a genetic disease”. The stages can be summarised as follows – first the clinical identification of the condition, then description of the physiological/biochemical defect, identification of the gene and mutations, elucidation of the function of the gene product, understanding how mutations cause dysfunction of the gene product, explanation how mutations cause disease and the development of therapies.
Fig 23. Paul Quinton
1999 Quinton PM. Physiological basis of cystic fibrosis: a historical perspective. Physiol Rev 1999; 79:S3-S22 [PubMed]
A very clear review by one of the pioneers of CF research particularly putting into perspective the various phases of understanding of the basic defect; in particular. discussing the two apparently distinct faces of CF – that of a mucus abnormality and one with defects in electrolyte transport. Quinton notes that CF “has advanced from innumerable speculations about its cause to a precise definition of causative mutations accompanied by accurate quantitative descriptions of their physiological effects”.
2001 Cystic Fibrosis in the 20th Century. People Events and Progress. Doershuk CF (Ed). A M Publishing Ltd, Cleveland, Ohio. 2001
Fig 24. Cystic Fibrosis in the 20th Century
Fig 24. Carl Doershuk
A very substantial and interesting multi-author account of the developments in CF with a strong emphasis on the North American scene edited by Dr Carl Doershuk (figure 24). Carl Doershuk joined Leroy Matthews at the CF clinic in Cleveland in 1960, initially as a Senior Resident, within 3 years of Matthews starting his “comprehensive and prophylactic (preventive) treatment programme” in 1957. There are chapters by many of the those involved in CF in North America, such as Paul di Sant’Agnese, Paul Quinton and many others, looking back with their personal views on the developments in many areas
Dr Doershuk kindly gave me permission to use illustrations and material from his book for which I am very grateful.
2004 Wellcome Witnesses to Twentieth Century Medicine. Volume 20. Cystic Fibrosis. Christie DA, Tansey EM. (Eds). Wellcome Trust Centre for the History of Medicine at University College. London.
The transcript of a Witness Seminar held by the Wellcome Trust Centre for the History of Medicine at UCL, London, on 11 June 2002. Introduced and co-chaired by Professor John Walker-Smith, a retired Paediatric Gastroenterologist and Dr Jim Littlewood – the then Chairman of the CF Trust’s Research and Medical Advisory Committee. Some 40 people who had been involved with either the science or clinical aspects of CF spent the afternoon reminiscing on their experiences. In particular Dr Archie Norman and Sir John Batten both contributed as did Dr Phillip Farrell, who was visiting from the USA at the time.
2004 The Joseph Levy Memorial Lecture. “Looking back over 40 years and what the future holds”. Littlewood JM.
25a. Gerd Doring, the President, presenting Jim Littlewood with the Rossi Medal in 2004
Fig 25. The 2004 Joseph Levy Memorial Lecture
In 2004 Jim Littlewood was awarded the Joseph Levy Memorial Lectureship by CF Worldwide. Every fourth year the North American and European CF organisations combined and joined with CF Worldwide to put on an international meeting which replaced the annual European meeting. The Joseph Levy Memorial Lecture was delivered at the Opening Ceremony of the 27th European Cystic Fibrosis Conference 2004 in Birmingham, UK. The lecturer usually based his/her lecture on a subject which had been a major interest of their’s over the years. I had by that time had quite a long experience since qualifying in 1956, almost amounting to history! So I choose to review the history of cystic fibrosis much of which I had been involved in and speculate on the future.
A full transcript of the 2004 lecture with references can be downloaded from the UK CF Trust website (www.cysticfibrosis.org.uk) or directly from the Internet (enter Joseph Levy Memorial Lecture 2004)
In 2004, at the same meeting, Jim Littlewood was awarded the Rossi Medal of the European Cystic Fibrosis Society.(figure 25a).
2008 Fanos JH. “We kept our promises”: An oral history of Harry Shwachman, MD. Am J Med Genet Part A 146A:284-293.[PubMed]
A really fascinating account of an interview with Harry Shwachman and his wife in 1984 – some 2 years before his deathHarry Shwachman, M.D., was Chief of the Division of Clinical Nutrition at Children’s Hospital, Boston, which eventually became the largest Cystic Fibrosis (CF) center in the world. For over four decades he pioneered understanding of the disease and developed a program of diagnosis and treatment that dramatically extended the lives of children affected with CF. During his own childhood, he developed bilateral pneumonia and nearly died. He received a BS from M.I.T in 1932, and an MD from Johns Hopkins in 1936. He completed his internship and residency at Johns Hopkins and Children’s Hospital, Boston (1937–1941). In 1947 he returned from Army service to Boston where he resumed his medical practice and research. Dr. Shwachman discovered a less invasive screening procedure for CF than the intubation technique used previously. In the late 1940s he and his colleagues identified pulmonary involvement to be the primary manifestation of CF. He was instrumental in establishing the autosomal recessive genetic pattern of CF [Allen et al., 1956]. He introduced new treatment methods that changed the management of CF, including the use of antibiotics in 1948, a new pancreatic enzyme replacement, and chest physical therapy. In 1954 Shwachman developed the first reproducible sweat test at Children’s Hospital, Boston, and in 1955 he helped establish the Cystic Fibrosis Foundation. He authored over 250 publications, trained generations of researchers, and was a dedicated clinician, legendary for his devotion to his patients and their families. In addition, he was an accomplished violinist and founding member of the Newton Symphony Orchestra. He and Irene, his wife of 42 years, had three children: Elizabeth, Joan, and Alan, and at the time of interview, three grandchildren. This autobiographical vignette is based on excerpts from an interview I conducted of Dr. Shwachman and his wife in their home in Boston in 1984, 2 years prior to his death. © 2008 Wiley‐Liss, Inc.
2016 Wilmott Robert W. An invited article. “A Historical Perspective of Cystic Fibrosis”. Hong Kong Journal Paediatrics 2016;21:280-285.
Fig 25b. Robert W Wilmott
A concise very readable chronological history of cystic fibrosis by Professor Robert Wilmott (fig25b) Robert, who qualified in England, is a paediatric pulmonologist in St Louis. After a successful career there he has recently been appointed Vice President for Medical Affairs and Dean of the University School of Medicine, effective from August 2019 until 2021.
Robert Wilmott has served in leadership positions at St Louis University since 2001, including 17 years as Chair of the Department of Pediatrics. He has received numerous awards and has been named a St. Louis “Best Doc” by St. Louis Magazine every year since 2002.
2016 Hodson and Geddes’ Cystic Fibrosis. Fourth Edition Eds. Andrew Bush, Diana Bilton & Margaret Hodson. CRC Press. Taylor and Francis Group.
Hodson and Geddes’ Cystic Fibrosis
The following two chapters in this recent textbook (figure 26) relate to the history of cystic fibrosis
– Kris De Boeck. Introduction: From the discovery of the gene in 1989 through to 2014 pp 3-17
– James M Littlewood. Appendix A: History of cystic fibrosis. pp 633-649
VARIOUS ARTICLES BY DR RONALD BUSCH
Dr Med. Roland Busch (Medizinisches Zentrum Mitte Rostock, E.-Hilzheimer-Straffe 22-29, Rostock 1, DDR-2500, GDR) has written extensively on the history of cystic fibrosis and reviewed many reports from the Middle Ages onwards of children many of whom may have had the condition. Unfortunately I have not been successful in contacting him.
1971 Busch R. Zur m der Mukoviscidose beim Neugenboren. (Comprehension of mucoviscidosis in the newborn). Kinderarztl Prax 1971; 39:268-271. (German)[PubMed]
A short article dealing mainly with newborn screening which in 1971 was by examination of the meconium for excess albumin. There is mention of the suggestion of Schutt & Isles (1968, above) to use the Albustix test for detecting the excessive albumin in a solution of meconium.
1978 Busch R. The history of cystic fibrosis. NIH Lib. Trans.53; 316-381.
1978 Busch R: On the history of cystic mucoviscidosis. Deutche Gesundhs.1978; 33:316-320.
This article is in German and contains many references. The English summary: Up to now the casuistry on a newborn that had died of a meconium ileus, its pancreas showing histological typical alterations, published by Karl Landsteiner in 1905 was considered to be the oldest scientific publication. From the literature published before Landsteiner preponderantly cases of gastrointestinal or mixed form of mucoviscidosis may be traced back to the first half of the 19th century. A postmortem record from Vienna in 1838 signed by Rokitansky contains the oldest scientific exactly described presentation in the form of a perforation of the small intestine accompanied by a meconium peritonitis. Besides that by means of an ancient superstition the mucoviscidosis in the folklore area may be traced back till the 17th century.
1979 Busch R. Zur Fruhgeschichte der zystischen Pankreasfibromatose. NTM-Schriftenr Gesch Naturwuiss 1979; 16:95-109. (German).
Only 11 of the 104 references are in English. An extensive review of the previous reports suggesting cystic fibrosis with pictures of Landsteiner, Heubner and Fanconi but interestingly no mention of Dorothy Andersen!
1983 Busch R. Mucoviscidosis (cystic fibrosis), a disease of unclear structure until recently. (German). Gegenbaurs Morphol Jahrb 1983; 129:459-465.[PubMed]
The summary is as follows – “Cystic fibrosis (mucoviscidosis) is described in a review article. The cause of this common lethal hereditary disease of white people is hitherto unknown. The early death of patients with cystic fibrosis, a genetic paradoxon, a lot of hypotheses and very high demands in treatment should challenge more scientists for research. There are added some short notes about the authors work in the history of cystic fibrosis.
1986 Busch R. Historical aspects of cystic fibrosis. Wissenshaftlike zeitsschrift der Willempieck Universistat Rostock. 1986; 35:84-87. 1987 Busch R. Cystic Fibrosis in the XIX century. Arch Hist Filoz Med 1987; 50: 427- 434. (English with Polish summary)[PubMed]
The author investigated the medical literature of the 19th century to detect case records suggestive of the patients having had cystic fibrosis. During the century, not withstanding microscopic techniques, there was little progress in research about the pancreas and meconium. There are useful references to and comments on the German literature dealing with this subject. A number of these reports suggested that the children may have had cystic fibrosis.
1990 Busch R. The history of cystic fibrosis. Acta Univ Carol Med 1990; [PubMed]
Cystic fibrosis is said to have arisen due to a gene mutation 4000 to 5000 years ago (but also see Busch 2005 below). Migration of peoples, gene mutations and new conditions in nourishment could have been the causes. Resulting from old cleaning ceremonies and preventing or treating uncanny effects in children, it was usual to lick the forehead of newborns and children crosswise. If one perceived a salty taste, the child was called bewitched or fascinated and was feared to die soon. The author identified such descriptions in 12 states of modern Europe. Medical documents are reviewed from the first case report until Carl von Rokitansky in 1838 (see below).
1991 Busch R. On the history of cystic fibrosis. Nord Medicinhist Arsb 1991; 95-98.[PubMed]
It is supposed that CF appeared about 3000 BC. Migration of peoples, gene mutations and new conditions in nourishment could have been the cause. Resulting from old cleaning ceremonies and preventing or treating uncanny effects in children, it was been usual to lick the forehead of newborn and children crosswise. If one perceived a salty taste, the child was called bewitched or fascinated and was feared to die soon. The author found describing in 12 states of modern Europe. Medical documents from first case reports are reviewed”.
It is noted that there are no suggestive reports from the United Kingdom and Northern Ireland, nor does the Encyclopedia of Superstitions by Radford and Radford, 1948, contain any key word on cystic fibrosis. The case of Pauw (1595 above) is mentioned also a girl of 3 years treated in 1673 by Georg Seger, a German doctor. Fever, vomiting, diarrhea and wasting for a considerable time before death; the only pathological finding at autopsy was an indurated and scirrhous pancreas
2005 Busch R. What do we know about the history of cystic fibrosis? Quebec Adult CF Newsletter. 2005; 28-30.
An excellent brief account of many of the earlier references to children who may possibly have had cystic fibrosis. “Around the time when Palaeolithic man left Africa and entered eastern Mediterranean, that is about 52,000 years ago, a gene mutation, the gene mutation responsible for cystic fibrosis first appeared, likely in the Near East” (note also Busch 1990 above re. the dates of the suggested mutation).
2007 Westwood T, Ramsay M. Medical/Scientific topic. Something New Out of Africa: Cystic Fibrosis Affects All Peoples. http://www.cfww.org. CF Worldwide Newsletter Jan 15th 2007.
Fig 27. Michelle Ramsay
An interesting account of CF in South Africa. The article can be downloaded from the website.
Dr. Tony Westwood is a general paediatrician at the Red Cross War Memorial Children’s Hospital in Cape Town. He is the head of the Outpatient and Emergency Departments of the hospital. He is also a senior lecturer in the School of Child and Adolescent Health of the University of Cape Town. He has worked in the hospital’s CF Clinic since 1992 and recently completed a doctoral thesis based on his research on CF in Cape Town and its environs.
Professor Michele Ramsay (figure 27) is head of the Molecular Genetics Laboratory in the Division of Human Genetics at the
Fig 28. Robert (Bob) Beall
National Health Laboratory Service and the University of the Witwatersrand. Her PhD was followed by a two-year Postdoctoral Fellowship in London, working on the molecular basis of CF. Currently, her laboratory provides a diagnostic service for the molecular investigation of multiple single gene disorders. Her research interests include CF in the black African population, pigmentation in health and disease, hermaphroditism and genetic predisposition to fetal alcohol syndrome.
2009 Robert Steven Kaplan, Sophie Hood. “Bob Beall at the Cystic Fibrosis Foundation”. Published by The Harvard Business School. 9-409-107. April 17th 2009. Copies and permissions from www.hbsp.harvard.edu/education.
This is a fascinating account, originally developed for class discussion, of the history and workings of the CF Foundation and its President and Chief Executive Officer Bob Beall (figure 28) .
2013 Watt P. For the Roses. Cystic Fibrosis Ireland. Published by Cystic Fibrosis Ireland (www.cfireland.ie)
Fig 29. Philip Watt
A very interesting and liberally illustrated account of the history of the Cystic Fibrosis Association of Ireland (now Cystic Fibrosis Ireland) and CF developments there over the 50 years since the organisation was formed in 1963.
The book was written by Philip Watt (figure 29) the present Chief Executive Officer, who kindly provided with me with a copy. In a letter with the copy Philip writes – “In researching the book and in particular talking to some of those involved in the early days, it quickly struck us that in CF Ireland that we had not done nearly enough to document, acknowledge and thank people who have made such a difference to the CF narrative in Ireland. We were very fortunate that the two women who founded the association were (and remain) alive and well”. Philip refers to Anne O’Dwyer and Bridie Maguire who are widely acknowledged as the two most important people in the establishment and development of the CF Association of Ireland.
2007 “History of the European Working Group for Cystic Fibrosis & European Cystic Fibrosis Society Conferences” A lecture by Professor Niels Hoiby adapted by Dr Jim Littlewood
This lecture on the history of the European Working Group for Cystic Fibrosis (EWGCF) and the European Cystic Fibrosis Society (ECFS) conferences was given by Professor Niels Hoiby in 2007 at the 30th Annual Conference of the European Cystic Fibrosis Society in Belec, Turkey. We are grateful to Niels for permission to publish the presentation and allow the addition of some comments.
Fig 1. Ettore Rossi
Professor Ettore Rossi (figure 1) was Chairman of the Department of Paediatrics of the University of Berne, Switzerland from 1956 until he retired in 1985. He was one of the central figures involved in the development of very many areas of paediatrics in Europe, including cystic fibrosis. I (Jim Littlewood) met Professor Rossi only briefly on a few occasions – one incident left me with a lasting impression of his kindness and humanity. At an International CF Conference, when he was chairing a plenary session, he had no hesitation in informing one very senior presenter, who had just described a study involving children with CF in numerous annual needle biopsies of the liver, in no uncertain terms, precisely what he thought of the ethics of the study!
He was obviously held in high regard by those who knew him and described as an enthusiastic teacher, a serious hard working paediatrician and a superb medical friend – “the beloved father of hundreds of paediatricians in the whole world”.
In 1969 the first informal meeting of the European Working Group for Cystic Fibrosis (EWGCF) was held at Interlaken, Switzerland and chaired by Professor Rossi. The European Working Party for Cystic Fibrosis was an informal group the founding meeting being held in Cambridge in the UK 1969 with Professor Rossi of Bern, Switzerland (figure 1) as the founding father and first president. The EWGCF only task was to organise annual
Fig 2. Ron Tucker
European CF Conferences in different countries and in that way develop CF care and research throughout Europe. There were no bye-laws. The Secretary, Dr Beat Hadorn is remembered for his early work on pancreatic function tests (Hadorn et al, 1968).
The treasurer, Ron Tucker OBE (figure 2) was the first Director of the UK Cystic Fibrosis Research Trust (now the CF Trust). The second secretary representing Eastern Europe, Vera Vavrova of Prague, was involved in CF care for many years and was awarded the medal of the ECFS in 2008 (figure). Her very interesting presentation “The Story of Cystic Fibrosis in Prague” is available on the ECFS website
Annual meetings of the EWGCF from 1970 to 1977. The President of the conference was usually the senior clinician involved in CF care in that city. (Details from the ECFS website)
1969 Cambridge, UK – Founding Meeting of the European Working Group for Cystic Fibrosis (EWGCF) – E Rossi elected President
1970 1st ECFC – Stockholm, Sweden – Local President/Secretary: Lindquist/Kollberg – Society President/Secretary: E. Rossi/Hadorn
1971 2nd ECFC – London, UK – Local President: Lawson – Society President/Secretary: E. Rossi/Hadorn
1972 3rd ECFC – Reinhardshausen, Germany – Local President: Stephan – Society President/Secretary: E. Rossi/Hadorn
1973 4th ECFC – Warsaw, Poland – Local President: Bozkowa – Society President/Secretary: E. Rossi/Hadorn
1974 5th ECFC – Verona, Italy – Local President/Secretary: Mengoli/Mastella – Society President/Secretary: Mengoli/Hadorn
1975 6th ECFC – Dublin, Ireland – Local President/Secretary: Lyons/Harris – Society President/Secretary: Tempany/Hadorn 1976 No Meeting – 7th International CF Conference – Paris, France
1977 7th ECFC – Dresden, Germany (figure 7) – Local President/Secretary: Dietzsch/Gottschalk – Society President/Secretary: E. Rossi/Hadorn
Fig 3. Arrowed in the picture at the 1977 Dresden Conference from left to right are Beat Hadorn, Niels Hoiby and Hans -Joachim Dietzsch
By 1977 the EWGCF conferences were becoming larger and there were 170 participants from 19 European countries, USA and Canada, at the Dresden conference of that year.
Professor Hans-Joachim Dietzsch and Dr Bodo Gottschalk worked in Dresden in the German Democratic Republic. In the Eighties Dr Gottschalk visited a number of CF centres in the UK, including our own in Leeds and did not return to Eastern Germany.
EWGCF Conferences 1978 – 1984 During most of this period Manfred Gotz of Vienna (figure 4) and Richard Kraemer of Berne (figure 5) were involved as EWGCF Present and Secretary respectively.
Fig 4,. Manfred Gotz
Fig 5. Richard Kraemer
1984 No Meeting – 9th International CF Conference – Brighton, UK 1983 12th ECFC – Athens, Greece – Local President/Secretary: Adam/Manolaki – Society President/Secretary: M. Götz/Kraemer 1982 11th ECFC – Brussels, Belgium – Local President/Secretary: D. Baran/Van Geffel 1981 10th ECFC – Bern, Switzerland – Local President/Secretary: E. Rossi/Kraemer – Society President/Secretary: M. Götz/Kraemer 1980 8th International CF Conference – Toronto, Canada 1979 9th ECFC – Noordwijkerhout, the Netherlands – Local President: Kerrebijn – Society President/Secretary: M. Götz/Kraemer 1978 8th ECFC – Badgastein, Austria – Local President/Secretary: Stur/Götz – Society President/Secretary: Stur/Hadorn
Fig 6. Warren Warwick and Niels Hoiby
At the 1979 Leuwen meeting in the Netherlands, Warren Warwick is seen talking with Niels Hoiby. (figure 6) Warren Warwick of Minnesota is one of the pioneers of CF care in N. America – in particular, he started the first CF patient registry in the USA in the early Sixties. Warren was still attending CF meetings in 2011. He was also closely involved in the development of the physiotherapy vest eventually used by over half the people with CF in North America.
Warren Warwick was an admirer of the Copenhagen CF centre and wrote in 1982 – “Beginning early in the nineteen-sixties the excellence of the work in pulmonary and cystic fibrosis research done at the Paediatrics Department TG attracted interest from around the world and cystic fibrosis researchers from everywhere began to visit Denmark to learn from Doctor Erhard Winge Flensborg. I joined that group of visitors in 1966 when I wrote to Doctor Flensborg for permission to visit his department. Like all the others, I was welcomed. The intellectual stimulation there surrounded by the sparkling hospitality of Erhard and Inga Flensborg and the doctors studying at Paediatric Department TG was so helpful that I have eagerly returned on many occasions over these past 16 years, as have others who have made a first visit to Paediatric Department TG”.
Niels Hoiby (figure 7) had entered the CF field in the early Seventies in Copenhagen, where a CF centre had been started in the mid-Sixties by Erhard Winge Flensborg. By 2011 Niels was the author or co-author of over 500 publications, most on the microbiological and immunological aspects of cystic fibrosis.
EWGCF Conferences 1985 – 1990 From 1987 Niels Hoiby (figure 7) was the President and Martin Schoni (figure 8) the secretary of the EWGCF.
Fig 8. Martin Schoni
Fig 7. Niels Hoiby
1985 13th ECFC – Jerusalem, Israel – Local President/Secretary: Katznelson/Godfrey – Society President/Secretary: M. Götz/Kraemer 1986 14th ECFC – Budapest, Hungary – Local President/Secretary: Boda/Gyurkovits – Society President/Secretary: M. Götz/Kraemer 1987 15th ECFC – Oslo, Norway Local President: Michalsen – Society President/Secretary: N. Høiby/M. Schöni 1988 Meeting – 10th International CF Conference – Sydney, Australia 1989 16th ECFC – Prague, Czech Republic – Local President/Secretary: Houstek/Vávrová – Society President/Secretary: N. Høiby/M. Schöni
1990 Joint meeting with the North American CF Conference – Washington, USA
1986 the 1st Latin American CF Congress in Buenos Aires, Argentina. (figure 9)
Fig 9. Omar Pivetta (Arg) Robert D McCreery(USA), Niels Hoiby (DK), John Mangos (USA) 1986 Buenos Aires
Omar Pivetta is a local paediatrician. Robert (“Bob”) McCreery was President of the International Cystic Fibrosis (Mucoviscidosis) Association (ICF(M)A). (figure 9). He had been elected in 1976 and for many years was a major international figure on the CF scen
John Mangos (figure 9) from the USA was a leading CF researcher and paediatrician – he was also a priest. It is reported that he was once asked to see a patient while still in his priest’s robes. The startled patient awoke and declared “Surely I’m not that bad!!”
Robert and Linda (figure 10) (later Sir Robert and Lady Linda) Johnson had two children with CF and were involved with the UK CF Research Trust from the early Sixties and later with the ICF(M)A. Sir Robert only retired as Vice Chairman of the UK CF Trust in 2009. Both were awarded the John Panchaud medal of the CF Trust for their work.
Fig 10. Linda Johnson (UK),George Adams (GR), Paul Quinton (USA), Inge Saxon Mills (Italy)
George Adam (sitting in the figure 10) was a leading paediatrician in Athens and health issues among children called involved in CF care in Greece. He was President of the 1983 EWGCF conference in Athens. He had followed Dr Maria Nicolaidou who had been a pioneer of CF care in Greece, after she returned to Athens in the Sixties having visited Dr Harry Shwachman in Boston.
Paul Quinton (standing at the desk in figure 10) is a leading US scientific researcher, who described the impermeability of the sweat gland duct to chloride, regarded as one of the key scientific discoveries of the Eighties. Paul Quinton has cystic fibrosis.
THE CYSTIC FIBROSIS GENE WAS IDENTIFIED IN 1989
Fig 11. Presentation of the Paul di Sant’Agnese Award to the leaders of the teams who identified the gene – fro L. to R. are Lap Chi Tsui, Paul di Sant’Agnese, Evelyn Graub, Milton Graub, Francis Collins and jack Riordan
There was a memorable NACFC Conference held in the autumn of 1989 soon after the publication of the three historic papers in Science reporting the identification of the CF gene (for more details see “1989 Science”). There was a general air of euphoria that it would only be a short time before gene therapy would be available for patients – unfortunately within a few years the difficulties soon became apparent and even by 2011 gene therapy was still not available for the patients. However, the UK Gene Therapy Consortium of clinicians and scientists in London, Oxford and Edinburgh embarked on a multi dose year-long trial of gene therapy in 2012.This showed some effect but not sufficient to recommend as a treatment. However, by 2018 the UKGTC were preparing to embark of a further gene therapy trial this time using a more efficient viral derived vector
In 1965 the International Cystic Fibrosis (Mucoviscidosis) Association (ICFMA), the predecessor of CF Worldwide, was formed in Paris under the medical chairmanship of Paul di Sant’ Agnese.
At this time the EWGCF was contributing to the work on ICF(M)A grants. In 1960, prior to his moving from New York to The National Institutes of Health, di Sant’Agnese visited Europe to meet other clinicians interested in cystic fibrosis. These included Prof. Guido Fanconi and Prof. Ettore Rossi (Switzerland), Prof. Andre Hennequet and Dr Jean Feigelson (France), Drs Archie Norman and David Lawson (England), Prof. G de Toni (Italy) and Profs. Wejiers, Dicke and Van de Kamer (Holland).
The aims of the ICF(M)A were to improve the care of children and adults who had CF, to foster research and to disseminate information. Also di Sant’Agnese notes that prior to this meeting those working in CF did not know each other except through the literature and so the ICFMA brought together physicians, paramedical personnel and lay people giving them a sense of common purpose. This was the start of the International CF (ICFMA) now CF Worldwide meetings, which occur every 4 years. It is difficult to appreciate the problems with communication and travel in the Sixties – before the days of easy air travel, photocopiers, fax machines, e-mail, internet and medical databases such as Medline and Pubmed. So the formation of the ICF(M)A was undoubtedly a major milestone.
Fig 12. ICF(M)A course in Petersburg, 1992. Christian Koch, Niels Hoiby, A Hansen, Russian Dr T Guembitskaya, V Baranov
On the left of this group in St Petersburg (figure 12) are Christian Koch (paediatrician) and Niels Hoiby (microbiologist), respectively the clinical and scientific leaders of the very successful Danish CF Centre in Copenhagen.
In the previous year a seminal publication from their centre (1991 Valerius NH, Koch C, Hoiby N. Prevention of chronic Pseudomonas aeruginosa infection in cystic fibrosis by early treatment. Lancet 1991; 338:725-726) had reported that early Pseudomonas aeruginosa infection could be eradicated by a 3 week course of inhaled colomycin and oral ciprofloxacin. Undoubtedly one of the more important papers in the CF literature up to that ti
1988 10th International CF Conference Sydney Australia EWGCF Conferences 1991-1997
EWGCF Conferences 1991-1997
1991 Copenhagen, Denmark Hoiby/Schoni (Hoiby/Pedersen) 1992 International Meeting Dublin Eire 1993 Madrid, Spain Hoiby/Schoni (Escobar/Baquero/Suarez)
1994 Paris, France Hoiby/Schoni(Navarro)
1995 Brussels, Belgium Hoiby/Schoni (Baran/Dab)
1996 International Meeting – Jerusalem
1997 Davos, Switzerland EWGCF Hoiby/Schoni (Schoni/Kraemer/Rossi) ECFS Hoiby/Ryley
Fig 13. Jean Fiegelson, Paris. N Kapranov, Moscow. Martin Weibel Switzerland, President of ICF(M)A. EWGCF Copenhagen 1991
Jean Feigelson of Paris (figure 13 upper) is one of the pioneers of CF care and still, in 2010 attending CF conferences in Europe and North America. He trained in paediatrics at the Sick Children’s Clinic in Oslo in 1952. In a career spanning over 45 years he has treated over 250 people with cystic fibrosis. Jean Feigelson’s first recorded paper on cystic fibrosis was in 1960 (Feigelson J. The treatment of mucoviscidosis or cystic fibrosis of the pancreas. Bull Mem Soc Med Paris 1960; 9:4-17); his most recent is as a co-author of a paper on partial splenectomy, which was published in 2007 (Louis D et al, Pediatr Pulmonol 2007; 42:1173-1180). He has 48 references noted in Medline produced steadily over 40 years
Dr Kapranov (figure 13) presented an account of CF developments in Russia at a meeting of the Royal Society of Medicine in 1995. (Cystic Fibrosis in Russia: background and a model for future collaboration with the West. Kapranov N, Ginter E, Kashirskaja N, Hill CM, Ilangovan P, Rolles CJ. J R Soc Med. 1996;89 Suppl 27:44-7. Review. No abstract available). The first case of CF was diagnosed in Russia in 1967 and it was not until 1989 that the first two CF centres opened, the first in Moscow and the second in St Petersburg.
A more recent account (2007) on the “Management of Cystic Fibrosis in Russia” by Kashirskaya N.Y and Kapranov N.I. from the Russian CF Centre, Research Centre for Medical Genetics, RAMS, Moscow, Russia, is published on the internet under that title.
Fig 14. EWGCF Bruxelles 1993. David Baran, Niels Hoiby, Isi Dab
Professor Isi Dab (figure 14) made many important contributions to CF (Malfroot A, Dab I. New insights on gastro-oesophageal reflux in cystic fibrosis by longitudinal follow up. Arch Dis Child 1991; 66:1339-1345). Gastro oesophageal (GO) reflux was first described as a problem in CF by Jean Feigelson (Feigelson et al, 1975) and subsequently the problem was thought to be related to progressive CF in older children. However, in the Belgian study from Anne Malfroot and Isi Dab, 21 of 26 (81%) young children with CF aged less than 60 months were studied and 20 confirmed to have reflux by oesophageal pH tracings. Sixteen improved with anti-reflux treatment with improved weight gain, less cough and wheeze but half still had the reflux one year later. The authors concluded the reflux was not caused by the CF chest problems as it improved with time – at the same time as the CF gets worse – hence their title “new insights into GO reflux”.
Professor David Baran (figure 14) from Brussels has published on a wide variety of topics related to CF since 1970 most recently on the use of N-acetylcysteine (App EM, et al. Eur Respir J. 2002;19:294-302).
Fig 15. ECFS Paris 1994. Henry Riley
Fig 16. EWGCF BRUXELLES 1995. C Moser, H Krogh Johansen (DK)
Dr Henry Riley,(figure 15) the microbiologist from Cardiff, has been involved in CF care and research for many years. He has also been involved in various senior roles with the EWGCF and then the ECFS. He still is active in the production of the ECFS newsletter.
1997 THE EUROPEAN CYSTIC FIBROSIS SOCIETY WAS FOUNDED IN DAVOS
European CF Society Conferences 1998 – 2005
1998 Berlin, Germany Hoiby – Gerd Döring (WahDöring) elected new President
(Van der Laag/Heijerman)
1999 Latin American CF Congress Buenos Aires
2000 International Stockholm, Sweden
2001 Vienna, Austria Döring(Gotz)
2002 Genoa, Italy Döring (Romano)
2003 Belfast, N Ireland Döring (Elborn)
2004 Birmingham UK Döring (Littlewood/Geddes)
2005 Crete, Greece Döring (Nousia-Arvanitakis)
Marie Johannessonn was elected President starting after the 2006 congress
1999 First Consensus Conference, Artimino, Florence
Fig 18. First Artimino Conference in 1999
Fig 18a The Artimino Nutritional Conference
Gerd Döring arranged a number of consensus conferences in Artimino, Italy (figure 18) A subject was chosen and preliminary documents prepared by leading workers in the particular area. A meeting was then convened of about 30 participants who had a strong interest and expertise in the topic under discussion and a consensus statement was developed at the meeting over 2 days. A report was then prepared and submitted for publication. Most of these consensus documents are available on the ECFS website as free downloads.
These conference that Gerd arranged proved to be a great success both from the consensus documents that resulted but also they were a very pleasant social occasion where delegates and the relatives could get together in a very pleasant informal environment.
European Cystic Fibrosis Society Conferences 2006-2012
2006 Copenhagen, Denmark Döring (Hoiby)
2007 Belek, Turkey Johannesson(Gocmen)
Marie Johannesson retired on the grounds of ill health and was succeeded by Stuart Elborn as President
2008 Prague, Czech Republic Elborn (Pohunek/Macek)
2009 Brest, France Elborn (Ferec/Lehn)
2010 Valencia, Spain Elborn (Sole/Vasquez)
2011 Hamburg, Germany Elborn (Ballman/Mall)
2012 Dublin Elborn (McElaveny/McKone/Plant
2013 Lisbon, Portugal Elborn (Amaral/Barreto)
2004 “New Frontiers in Basic Science of Cystic Fibrosis”
Fig 19. Margarida Amaral
In 2004, the ECFS began another annual conference which is entirely dedicated to basic science. The “New Frontiers in Basic Science of Cystic Fibrosis” Conferences are characterised by active discussion of data and ideas at the forefront of research on CF and CFTR, in an informal, co-operative environment. The ECFS acknowledge the enormous contribution of Prof. Margarida Amaral made in establishing these (figure 25).Two stalwarts of the European Working Group for Cystic Fibrosis and later the European Cystic Fibrosis Society receiving their well – deserved ECFS Awards from the President, Stuart Elborn (figures 26 and 27)The 2013 ECFS Award was presented to Professor Kevin Webb (United Kingdom) to acknowledge his substantial and remarkable contribution to cystic fibrosis care over 30 years. Also to recognise and honour the huge contribution his scientific research has had on our understanding of clinical care, genetics, and therapy – and the importance of cross infection of Burkholderia cepacia complex organisms and Psaeruginosa
Two stalwarts of the European Working Group for Cystic Fibrosis and later the European Cystic Fibrosis Society receiving the week-deserved ECFS Awards from the President, Stuart Elborn.
The 2011 ECFS Award was presented to Prof. Gerd Döring (Germany) (figure 21) in recognition of his outstanding contribution to unravelling of the complexities of infection and innate immunity in the CF lung and translating this knowledge into better treatment for people with CF. The ECFS also wished to recognise and honour the huge contribution he has made to the development of scientific research and clinical care in Europe through his leadership of the European Cystic Fibrosis Society.
The 2012 ECFS Award was presented to Professor Niels Høiby (Denmark) (figure 20) in recognition of his outstanding contribution to the understanding of Pseudomonas lung infection and translating this knowledge into better outcomes for people with cystic fibrosis. He was also recognised for his contribution as the Founding President of the European Cystic Fibrosis Society and his lifelong commitment to the CF center in Copenhagen.
Fig 21. Prof Gerd Doring receiving the ECFS Award in 2011
Fig 20. Prof. Niels Hoiby receiving the ECFS Award in 201
Fig 22. Professor Kevin Webb receiving the 2013 Award
The 2013 Award was presented to Professor Kevin Webb to acknowledge his substantial and remarkable contribution cystic fibrosis care over 30 years. Also to recognise and honour the huge contribution his scientific research has had on our understanding of the clinical care genetics and therapy and the importance of cross infection of Burkholderia cepacia complex organisms and Pseudomonas aeruginosa.
The 2014 ECFS Award was presented to Professor Eitan Kerem (Israel)
Fig 23. Prof. Eitan Kerem receiving the 2013 Award
To acknowledge his substantial and remarkable contribution to cystic fibrosis research. His interest in cystic fibrosis spans all aspects i.e. the association between phenotype and genotype, the molecular mechanisms for disease variability and the development of new mutation specific pharmacological therapies to correct the basic defects of cystic fibrosis. The promotions of the medical, ethical and rights aspects of children with chronic diseases is at the forefront of his interest. He has published many papers in this field and is known for his advocacy of children in need. He also has a record of building bridges between Israelis and Palestinians furthering peace through medicine wherever possible.
The 2015 ECFS Award was presented to Dr Carlo Castellani (Italy)
Fig 25. Professor Di Bilton reeking the award in 2016
Fig 24. Carlo Castellani receiving the award
Acknowledge his substantial and remarkable contribution to cystic fibrosis research and care. His main clinical and research interests lie in CF epidemiology, genotype/phenotype correlation, CF diagnosis, CFTR-related disorders, neonatal screening and CF adult car
Fig 25. Professor Diana Bilton received the ECFS Award in 2016 for her outstanding contribution to the treatment and care of patients with cystic fibrosis.
Dr Jeffrey Beekman received the award in 2017
Fig 26. Dr Jeffrey Beekman receiving the award in 2017
Dr Beekman received the award for his extensive research work, in particular stratifying infants
Dr Sue Madge receiving the award in 2018
with cystic fibrosis disease severity using intestinal organoid swelling as a biomarker of CFTR function.
Dr. J.M. Beekman obtained a PhD in molecular immunology in 2004, and performed multiple post docs in molecular and cell biology within various immunological settings. In October 2010, he became principle investigator at the UMC Utrecht, and started a novel translational research line focusing on cystic fibrosis, a genetic disease characterized by chronic inflammation and infection, in the largest clinical CF center of the Netherlands
Dr Sue Madge received the award in 2018
Susan Madge is a consultant nurse at the Royal Brompton Hospital and has been working with children and adults with CF for over 25 years. Her areas of interest and research included adolescence, burden of care, fertility and pregnancy, quality if life and end of life issues. Susan runs a multidisciplinary course on CF twice a year. She is also involved nationally and internationally on various aspects of CF. She is also involved with standards of care for CF and is currently a board member of the ECFS,
AUTHORS’ IMAGES AND LOCATIONS IN THE TEXT
If an image of an author is included anywhere in this History, the name and date of inclusion will be recorded here. In alphabetical order are the surname, second name and the section where the image can be found. More recently I have included some biographical information in the author’s text entry.
Altman Kimberley 2019, Acosta Edward P 2020A, Al-Haggar Mohamed 2020A, Altschuler David 2020, Amaral Margarida 1969 & 2020A, Andersen Dorothy 1938, Anderson Charlotte 1960 Ansell Barbara 1979 (In Newman), Archibald Alison 2017, Argent Barry 1989, Argent Penney in Physiotherapy Topic 2011, Aris Robert 1998, Arnold Christina 2020, Artimino Nutrition Conference 2000, Amirotti Andrea 2019, Arnold Christina 2020A, Arooj Parniya 2018, Ashby Deborah 1995 (in Smyth RL) Avery Mary Ellen 1967, Axon Tony 1979, Fares Walid Ayoub 2018 & 2019.
Bachelor Hannah 2017, Baker Mel 2020A, Balfour-Lynn 2006, 2020, Ballman Manfred 2000 & 2018, Bandieri Tiziano 2020B, Banting FrederickI 1922, Baran D 1975, Barben Juerg 2020A, Barbero Giulio 1963, Barker David 2016, Barnes Rosie 1990, Baroni Debora 2019, Barreda Christine 2020A, Barry Peter 2012, Bartell Jennifer 2020A, Batten John 1965, Baxter Peter 1989, Beauchamp Norma Fifties, Beall Robert 1955, Bear Christine 2020A, Beardsmore Carolyn 1994, Beasley Melanie 2020A, Bedwell David 1997, Becq Fred 2001 (in Dormer 2001), Beekmaan Jeffrey 2019, Belessis Yvonne 2012, Bell Scott 2011, 2019 & 2020A, Bellin Melena 2013, Bellon Gabriel 2007, Bentley Sian 2020A, Benden Christian 2018, Bentley Sian 2020, Bentur Lea 2020, Berkers Gitte 2019, Barreda Christina 2020, Bessonova Leona , 2018, Beverley David 1987, Bezzerri Valentino 2020A, Bienvenu Thierry 2020A, Bijarni-Mahay Sunita 2020B, Birket Susan 2020A, Bilton Di 2008 (in Nash 2008), Bethiama Yves 2018. Blackfan Kenneth 1932, Blackman Scott M 2016, Blanchard Ana 2017, Boat Thomas 1976, Bodian Martin 1952, Boelle Pierre-Yves 2019, Bombard Yvonne 2016, Bonhoure Anne 2020A, Boon Mieke 2020A, Borowitz Drucy 2004, Boucher Richard 2007, Bourke Stephen BI 2009, Boyd Christopher 2020A, Bowler Ian BI 1993, Boyle Michael BI 2001, Bozic Molly 2020A, Brady Herb 2020A, Bradley Judy 2013, Bramwell Byron 1904, Brandt Claudia 2018, Bratcher Preston 2016, Bray Peter 1978, Brennan Amanda 2010, Brett Moira 1986, Breuer Osmed 2019, Bridges Nicola 2013, 2018, Bright-Thomas Rowland 2010, Brindano Nicoletta 2020A, Britton John 2000 (In Fogarty), Brock David 1979, Brody Herb 2020, Brownlee Keith 2007 (in Etherington 2007), Bryon Mandy 2008, Buchdahl R 1988, Burgel Pierre-Regis 2020, Burke Martin 2019, Burns Jane 2001, Bush Andy 2002 (in Equi 2002), Button Brenda 1997, Bye Peter 2006 (in Elkins 2006) & 2019, Bye Peter 2007 (in picture with Coultard), Bye Peter 1991, Byrnes Laura J 2018.
Cade Alan 2000, Calthorpe Rebecca 2020A, Calvo-Lerma Joaquim BI 2017 & 2020A, Caparros-Martin Jose 2020A, Carrion Andres 2017, Carroll Mary BI 2006, Carter Cedric (in Bodian 1952), Carter Dee 2016, Carzino Rosemary 2019, Castellani Carlo 2009, Ceulemans Laurent 2016, Centko Ryan 2020A, Chan Cristine 2012, Chain Ernst 1929, 2018, , Chog hade Rajeev 2019, Cirilli Natalie 2018, Charles HRH Prince (Future), Chazalette Jean-Pierre 2007, Clancy John 2001, 2007, Campbell III Preston 1955 (also in Ramsay 1999), Charbeck Edward 2019, Chiarelli Laurant R 2020A, Charlier Phillipe 2018, Cristofoletti Rodrigo 2020A, Charmar Susan 2019, Chazalette Jean-Pierre B 2007, Chen Gang 2019, Chen Hung-Hain 2020A, Cipolli Marco 2020A, Clancy John 2018, Cho Do-Yeoh 2018, Chokoshvili Davit 2018, Christian Francis 2019, Clevers Hans 2020A, Clifton Ian 2010, Coates Allan 2011, Cochrane Archie 1995 (in Cochrane entry) Cochrane William Fifties, Coffey Michael 2017 & 2020A, Cogen Jonahan 2017, Cohen-Cymberknoh Malena 2016, Collaco Michael 2016 & 2020A, Colledge Bill 1995, Collins Francis 1989, Collins Sarah 2018, Colombo Carla 1990 & 2020A, Connett Garry 1999, Conway Steve 1985, Cooke Robert E 1959, Cooper Peter 1990, Cooper Yvette 2001, Corey Mary 1988, Corris Paul 2008, Cosgriff Rebecca 2020A, Coultard Kingsley 2007, Cortes-Santiago Nahir 2019, Coultard Kingsley 2006 (in Elkins 2006), Cortes-Santiago Nadia 2018, Cottrill Kirsten 2020, Crook Lord (Future), Crossley Jeannette1979, Crozier Douglas 1974, Crystal Ron 1994, Cuppens Harry 2008, Cuthbert Alan 2001 (in Duszyk 2001), Cutting Garry 2000 (in Mickle 2000).
Dab Isi Future Fig 21, Dankert-Roelse Jeanette 1995 & 2019, Darrah Rebecca 2016, Dark John 2008, Darling Robert 1952, Das Sayan 2020A, David Tim 1986, 1994 (In Conway, 1994) Davidson George 1971, Davidson George 1997 (in McIlwaine 1997), Davis Anthony 2019, Davis Stephanie 2016, Davies Jane 2005, 2000, 2019, 2020, Davis Pamela 1980, De Boeck Kris 2006 (in Sanders 2006), Dedrick Robert 2019, Delatycki Martin 2019, De Jonge Emma 2020A, De Jonge Hugo 2010 & 2020A, De Weerdt Sarah 2020, Denning Carolyn (in Bruce) 1960, Denton Miles 2004 (in Lee 2004), Denton R only B 1955, Destouni Apasia 2017, di Sant’Agnese 1946, Deterding Robin 2005, DeWeerdt Sarah 2020A, Dik Jan 2020A, Dicke Willem BI 1953, Dietzsch Hans-Joachim Future Fig 7, Di Magno Eugen 1973, DiMango Emily 2020A, Dik Jan 2020, Dinwiddie Bob 1990, Dobra Rebecca 2019, Dodd Katherine 1936, Dodd Mary 2005, Dodge John 1982, Doershuk Carl 1964 & 2000, Donaldson Scott 2017 & 2018, Dolgin Elie 2020, Donnakay Henry 2020A, Döring Gerd 1969, Dorin Julia 1992, 2018, Dormer Bob 2001, Doroudian Mohamed 2020A, Doull Iolo 1998 (in Lowden 1998), Downes Kevin 2017, Downey Damian 2019, Doyle Barbara 1959, Doyle Ronan 2019, Drew Liam 2020, Drumm Mitch BI 1990, Duclos Vallee Jean Charles 2018, Dubois Christine 1969, Duchesne Ernest 1929, Duckers jamie 2019, Durie Peter 1988, Dryden Carol 2018.
Eickmeier Olaf 2019, Edenborough Frank 2000,Edmondson Claire 2018, Edwards Sir Robert 2000 (in Rodgers 2000), Egan Mary 2020A, Ehre Camille 2019, Eiberg Hans 1985 Elborn Stuart 2000, 2005 (in Coraux 2000), 1999 (in Vavrova 1999) & 2020A & B, Elkins Mark 2006 & 2020A, Ellemunter Helmut 2015 Elliott Robert (Bob) 1974, Ellis James 2012, Engel Tobias 2019, Elston Caroline 2019, Englehardt John F 2011, Esposito Maria Valeria 2020A, Essex-Cater Alison 1989, Esther Charles 2019, Esterly John B 1960 Etherington Christine 2007 Equi Amanda C 2001 Evans Martin 1993 (in Ratcliff 1993) Everard Mark 1997
Fanconi Guido 1936, Farber Sidney 1943 I, Farrell Philip 2001 & 2020A, Fedder Jans 2020A, Feigelson Jean 1960, Ferec Claude (in Scotet 2010), Ferrera Loretta 2018 & 2019, Ferreira Thierry 2020B, Fisher Andrew 2008 Fink Aliza 2017, Fisman David 2020B, Fitzgerald MuirisI (in Mulherin 1991) 2012, Flemming Alexander 1929, Flensborg Erhard 95th Birthday 1968, Floto Andres 2016, Frasaniak Jason 2016, Fretzayes Andreas 2019, Florey Howard 1929, Flume Patrick 2007 & 2020A, Foong Rachel E 2018, Forstner Gordon 1982, Frederiksen Birgitte 2016, Freeman Rowland 1922, Frizzell Raymond 2006 (in Myerburg 2006), Frost Freddy 2019, Fuchs Henry 1994, Fukuda Ryosuke 2020A.
Gaillard Erol 2019 & 2020B, Gallagher Charles 2008, Gallietta Luis 2020B, Garaci Enrico 2017, Gale Philip 2019, Garbuzenko Olga 2019, Gardner Aaron 2019, Garrod Sir Archibald 1912, Gascgoine A 2009 (in Bourke 2009), Gaskin Kevin 1991 &2020A, Gawande Atul 2004, Geddes Duncan 1984 (in Winter 1984), Gee Samuel 1888, Gelfond Daniel 2017, Geller D 2011, Gellis Sydney 1966, Geurts Maarten 2020A, Ghosal Shomik 1995, Gibson Lewis E 1959, Gibson Ron 2003, Gifford Alex 2019, Gilbert John 1988, 1994 (in Conway, 1994), Gilchrist Francis 2019, Gileles-Hillel Alex 2020A, Gill Deborah 1993 (in Steve Hyde 1993) & 2019, Gillespie Terence Fifties, Giraerdet Anne 2005, Giustino Gennaro 2020A, Göçmen Ayhan 1993 (in Ozçelik U et al, 1994), Godfrey Simon 1971, Goetz Danielle 2019, Goodchild Mary 1973, Goldenberg Rachel 2018, Goldman Martin Antibiotic Topic 1997, Goldstein Allan 2017, Gomez Carla 2019, Gonska Tanya 2015, Goss Christopher 2015 & 2020A, Gotz Manfred 1989, Govan John 1993, Graeber Simon 2018, Gracey Michael 1969, Grand Richard 1998 (in Rosenstein 1998), Grasemann Hartmut 2015, Graub Milton 1989, Gray Michael 1989, Gray Michael 2020A, Green Anne 2007, Gregg Anthony BI 2018, Greening Andrew 2018, Griesenbach Uta 2012, Grubb Barbara 2017, Guimbellot Jennifer 2020A, Guhr Lee Tara 2020, Gyi Kim 2016.
Hadjiliadis Denis 2018, Hadorn Beat I Future Fig 7, 2006, Hahn Andrea 2020A, Hambleton Gary 1994 (in Conway 1994), Hamilton Jennifer 2019, Hammond Keith 1984 (in Reardon 1984,), Handelsman Jayne 2017, Hansen A 1991 (in Valerius 1991), Hansen Christine 2008, Hansson Gunnar 2012, Hardin Dana 2009, Harindhanavudhi Tasma 2019, Harun Sabariah Noor 2018, Harvey Brian 2020, Handyside Allan 2010, Hardaker Kate 2019, Hardcastle Jacqueline 1988, Hardcastle P 1988, Harper Joyce 2017,2018, Harper Margaret 1938 [1930, 1949], Harris Ann 1987, 2018, Harris Ryan 2016, Harris William 2017, Harvey Brian 2020B, Hatziagorou Elpis 2019, Hayee Bu 2019, Harrison Patrick 2019, Hayes Don Jr 2015, 2019, Heaf David BI 1996 (in Cheng 1996),, 1994 (in Conway 1994), Heeley Anthony 1982 & 2020B, Heeley Mary 1982 & 2020B, Heijerman Harry BI 1995 (in Gan 1995), Heijerman Harry BI 2002, Heltshe Soya 2015, Hernandos-Nieto Carlos 2020A, Herter Christian 1908, Hess Julius H 1935, Heubner Otto 1909, Hey Edmund 1984, Higgins Chris 1986, Hiller Joan 1986, Hilman Bettina 1967, Hisert Katherine 2016 & 2020A, Hodson Margaret 1981, Hofman Laurence 2019, Hoiby Niels 1973 & 2020B, Holtkamp Kim 2018, 1969 Holsclaw Douglas 1965, Holt Richard 2018 & 2020B, Holt Richard 2020B, Holzel Aaron 1962, Home Sir Everard 1813, Honeybourne David 2012, Hoo Zhe Hui 2018, Horati Hamid 2020A, Horsley Alex 2009, Haworth Charles 1999, 2011 Huang Nancy 1963, Hubert Dominique 2017 & 2018, Hurley Matthew 2018, Hussain Noreen 2018, Hyde Steve 1993 & 2019.
Innes Alistair 2010 (in MacDuff 2010), Irons J Yoon 2019, Isaiah Amal 2019, Ivy Andrew 1941 (in Beazell JM 1941), Jackson TB 1986.
Jablonski Christine Rousset 2018, Jaffe Adam 1998, Jarosz-Griffiths 2020A, Jarvholm Stina 2020, Jenkins Rowena 2015, Jelin Angela 2017, Jenkins Rowena 2019, Jensen Tim BI 1987, Johansen H, Krogh I Future Fig 22, Johnson Charlie 2003, Johnson Sir Robert Sixties, Jones Andy 2001, Jorth Peter 2019.
Kalnins Daina 2006, Kapnadak Siddhartha 2020A, Katznelson Daniel 2006, Kelleher Jerry 1986, 1981, 1994 (in Conway 1994), Kapranov N Future Fig 19, Kashirskaya Nataliya 2015, Kariyawasam Harsha Antibiotic Topic 2000, Keating Claire 2020A, Keating Dominic 2018, Kelly Andrea 2018 & 2019, Kelly Deidre 2006, Kerem Batseva 1989 & 2019, Kerem Eitan 2005, 2008, 2019, 2020A, Kessels Sharon 2019, Kessler Laurence 2018 & 2020A, Ketchell Ian 2019, Khamsi Roxanne 2020, King Christopher 2019, Kirman Laura 2018, Kissner 2018, Kleijnen Jos 2014, Knight Ron 1983, Knowles Michael 1981, Koch Christian 1991 (in Valerius 1991), Kollberg Hans 2003, Konigbruggen Silke von 2018, 2019, 2020B, Konstan Michael 1995,2018 & 2020A, Keogh Ruth 2018, Kopp Benjamin 2017 & 2020, Katsimbos Tom 2020B, Kraemer Richard 1978, Krainer Georg 2019, Kulczycki Lucas 1990 (in other publications section).
Larhiri Thomas 2016, Lobeck Charles C 1963, Laing Sony 1991, Lamont Iain 2019, Lands Larry 2007, Landsteiner Karl 1905, Langton-Hewer Simon 2017 & 2020A, Lannefors Louise (in Doyle 1959), Laselva Onofrio 2020, Latzin Phillippe 2019, Lawson David 1971, Latzin Phillipe 2018, Lau Dawn 2019, Le Grys Vicky A 2018, Lebecque Patrick 2006, Ledson Malcolm 1998, Lee Ann Marie 2017, Lee Sun Y 2018, Lee Tara Guhr 2020A, Lee Tim 2004, Lehn Pierre 2012, Lehoux Bubois Catherine 2018, Lenney Warren 2011, Lensink Michael 2020A, Lavelle Gillian 2017, Leung Daniel 2017, Levine Hagit 2016, Levison Henry 1987, Levy Joe 1962, Lieberman jack 1962, Lindblad Anders 1998, Linnane Barry 2016, Lipman Marc 2020, Littlewood Ann 1991, Littlewood Jim & Döring Gerd 2004 (in “Other Publications”), Littlewood Jim 1985, 1998 (in Rosenstein 1998), LiPuma JJ 1990, Lloyd-Still John 2006, Laraya-Cuasay Lourdes (in Huang 1963), Logie Karla 2019, Lombardi Enrico 2019, Lommatzsch Steve 2019, Lopeman Rose 2020A, Lopes-Neyra Alejandro 2020A, Lopes-Pacheco Miguela 2020A, Lovely Percy (Future), Lowe Charles U (in May 1954), Lusman Sarah 2020.
Macek Milan 2002,2008, Malfroot Anne 1991, MacDonald Anita 1988, Madge Sue 2006, Mahadeva Ravi 1998, Mahenthiralingam E 2001, Mahony Michael 2010, Marcinkiewicz Janusz 2020A, Mall Marcus 2020A, Mangos John BI 1967, Marshall Bruce C BI 1955, Marshal Susan 2006, Martin Lynne 2019, Massie John 2000, Mastella Gianni 1981, Matthews Leroy 1964, May Charles B only 1954 no image, Mayer-Hamblett 2001, 2018 & 2020B, McCormick Jonathan (I), McCabe Helen 2001 2002, McColley Susanna 2020B, McCormick Jonny 2002, McCrae Morris 1976, MacDonald Kelvin 2020B, McElvaney Oliver J 2020B, McElvaney Gerry 1991, McIntosh Rustin 1954, McKendrick Tom 1962, Mckenzie Cameron 2017, McKenzie Shiela 2007, McGarry Megan 2017, McGarry Megan 2019, McClenaghan Elliot 2020B, McIlwaine Maggie 1997 & 2019, McColley Susanna 2015,2018, McKone Ed 2006, McNamara John 2019, McPherson Maggie 2001, McVinish Lesley 1993 (mega papers), Mearns Margaret 1965, Meeker Stacy 2020B, Mehta Anil 2007 (in Sims 2007), Mehta Gita 2007 (in Sims 2007), MeterBerg Helena 2020A, Middleton Peter 2010 & 2019, Milla Carlos 2017, Millar Bronagh 2018, Milliken Eliza 2018, Miller Aaron 2019 & 2020B, Miller Michael 1985, Mithal Aditya 2020B, Modlin Sara 2019, Moeller Alexander 2020B, Mogayzel Peter 2013, Montgomery Bruce 1999 (in Ramsay 1999), Montgomery Mark 2010, Montgomery Samuel T 2020B, Morlacchi Letzia 2020, Moore John BI 2001, Moran Antoinette 2000, Morrison Cathleen 1959, Morrison Lisa Physiotherapy Topic 2011 1959, Mortacchi Letzia 2020B, Morrow Brenda 2019, Morton Alison 2000 (in Conway 2000), Moser C Future Fig 55, Mostoslavsky Gustavo 2020B, Moss Richard 2010 & 2020B, Mroz Magdalena 2019, Mukherjee Sujit 2019, Mukhopadhyay Somanth 2006, Muhlbach Marianne 2017, Munck Anne 2001 & 2020B, Munder Antje 2020A, Murphy Desmond 2013, Muraglia Katrina 2019, Muston Heather 2020B.
Nabi Zaheer 2020B, Nadas Alexander 1952, Nash Edward 2020B, Navarro Jean (Fiegelson 1975), Nazareth Dilip 2019, Nelson Bob 1973, 1994 (in Conway 1994), Newsome Simon 2018 & 2019, Ng Christabella 2020, Nielsen Kim Gjerum 2020, Nichols David 2019 & 2020B, Nicholas David 2017 & 2020B, Nissenbaum Claire 2020B, Norman Archie (in Bodian 1952, Northern CF Club 1994, Norris Andrew 2018,
O’Gara Fergal 2020A, Okiyoneda Tsukase 2020A, Olesen Hanne 2019, Olivier K 2015, Oh Youngman 2018, Olivier Kenneth 2015, O’Neill Katherine 2017, Oppenheimer Ella 1968, Onofrio Laselva 2018, Outraad Merel 2020B, Owusu Sandra Kwarteng 2020B, Owen Elizabeth 2020B.
Paajaner Juuso 2018 & 2019, Page Richard 1994 (in Conway 1994), Pan Alice 2020A, Panchaud John 1962, Pantin Charles 1986, Parmelee AH 1935, Panchaud Alice 2017, Parsons Leonard 1932, Pasque Michael 1990, Pasterkamp Hans 2019, Patel Vipul 2020B, Patterson Donald 1943, Puna Henrique 2017, Pauw Pieter 1595, Peckham Daniel 2007 (in Etherington 2007), 2020B, Pedemonte Nicoletta 2018, Pelg Anton 2017, Pencharz Paul 1984, Penketh Andrea 1987, Percicante Antonio 2018, Perrem Lucy 2019, Pezzulo Alejandro 2012, Phelan Peter BI 1969, 1984, Pilewski Joseph 2020B, Pitt Ty 1993 (in Smith DL 1993), Pivetta Omar I Future Fig 13, Plackett Benjamin 2020, Plant Barry 2013, Poetter-Lang Sarah 2019, Pollitt Rodney 1997, Porteous David 1997 & 2018, Poynton Frederick J 1914, Prader Andrea 1970, Prasad Armmani 2006, Prentice Bernadette 2020B, Prevaes Sabine 2017, Pressler Tacjana 2005, 1987, Price John 1979, Proesmans Marijke 2006, Pullen Lara 2020B, Putman Melissa 2020B.
Quaresma Margarida 2020A, Quaseda Roberto 2019, Quinton Paul 1983, Quittner Alexandra 2005, Quon Bradley S 2015, 2018 & 2019.
Rabassa-Lhoret Remi 2016, Rabin Harvey R 1980, Raeburn Sandy 1976, Ramm Grant 2020, Ramsay Michelle 1996, Ramsay Bonnie 1989, Ramsey Kathryn 2016 2007, Ramsay Kate 2019, Ranganathan Sarath 2001, Rassoulian Barrett Sara L 2020A, Ratjen Felix 2001, 2019 & 2020A, Raynaud Quitterie 2020B, Rayner Rosie 2006 (in Williams 2006), Redmond Aileen (in Maxwell 1979), Reece Emma 2019, Regelmann Warren BI 1990, Refolo Pietro 2018, Reitz Bruce 1985 (mega), Reid Lynne 1961, Remy Clare 2020A, Ren Clement 2017, Retsch-Bogart George Z Antibiotic Topic 2009, Reznikov Leah 2016, Rickham Peter BI 1965, Richards Christopher 2019, Riethmuller Joachim 2009, 2016, Righetti Giada 2020B, Jordan Jack 1989, Robberecht Eddie 2006 (also in Sinaasappel 2002), Roberts James 2017, Robertson James 2017, Robertson CF 2012, Robinson Paul 2019, Robinson Phil 2003, Robinson Teresa 1988, Rock Michael 2020A & B, Rodriquez-Miguelez Paula 2016,2018 & 2019, Rodgers Geraint 2020, Roehmel Jobst 2019, Rokitansky Karl 1838, Rolles Chris 1999, Romani Luigina 2017, Ronan Nicola 2017, Rossant Janet 2012, Rosen Bradley 2019, Rosenfield Margaret 2001, Rosenow Tim 2020, Rosenstein Beryl 1998, Ross Alan Fifties, Rossi Etorre 1969, Rowe Steven 2017 & 2020B, Rowe Rachel 2010, 2018, Rowbottam Nicola 2017, Rowland Marion 2015,, Rubin Bruce 2017, Ryan Amy 2020B, Ryley Henry 1991 (in Chatfield 1991).
Siman Lisa 2000, Salvatore Donatello 2019, Sanders Don B 2081, Salipante Stephen 2020A, Stanojevic Sania 2017, Sander-Struckmeier Suntje 2013, Sandvik Rikke Mulvad 2020B, Sarsfield Jim 1975, Savant Adrienne 2015, Sawacki Gregory 2018, Sawyer Abbey 2019, Scambler Thomas 2020A, Schauble Abigail 2019, Schidlow Daniel V 2000, Schneider-Futschik Elena 2018 & 2020, Schnyder Marie-Angela 2016, Scholte Bob 2020A, Schoni Martin 1984, Schwarz Carsetn 2020B, Scott-Jupp Robert 1990, Saavendra Miline 2018, Scott Patricia 2020B, Sermet-Gaudelus Isabelle BI 2010, Shoseyov David 2016, Shwachman Harry BI 1943, Schluter Daniela 2019, Schneider-Futschik Elena 2019 & 2020B, Scholte Bob 2020A, Schultz Andre 2015, 2018, Schmid-Mohler Gabriela 2019, Schwarz Martin BI 1998, Schechter Michael 2010, Scott Patricia 2020, Scully Kevin 2020B, Sellers Zachary M 2020B, Sergee Valentine 2019, Shak Steve 1993, Sharma Joyti 2020B, Sheldon Christopher 1993, Sheppard David 1999 & 2019, Shiner Margot 1888, Shteinberg Michal 2020, Shute Janis BI 2007, Shumway Norman 1985 (mega), Shwachman Harry BI (in Farber 1943), Siegel Marilyn 2020B, Simoneau Tregony BI 2015, Simmonds Eddie 2000, Simmonds Nicholas 2009, Simon Andre 2013, Sims Erika 2005, Sinaasappel Marrten 2002, Siracusa Christopher 2018, Shi Zhuqing 2020B, Sly Peter 2009, Smith Arnold 1989, Smyth Alan 2009 (in Antibiotic Treatment etc) & 2019, Smyth Ros 1995 (in Cochrane entry 1995) & 2020B, Snyder Eric 2019, Sokol Ronald 1989, Somayagi Ranjani 2019, Soulez Sommerwerck Urte 2017, Gilles BI 2006, Sondo Elvira 2019, Sposito Francesca 2020B, Southern Kevin BI 1997 (in Gill 1997), 2018, 2020B, Spencer Helen 2019, Spock Alexander 1967, Spoletini Giulia 2018, Stableforth David 1983, Stafler Patrick 2016, Stallings Virginia 2010,2018,2020B, Stahl Miriam 2017, Stanford Gemma 2020B, Stanojevic Sunja 2017, Stanton Bruce 2020B, Stalvey Michael 2017, Stapleton Patrick 2020, Starnes Vaughn 2004, Starzl Thomas 1989, Steinkamp Gratian 2016, Stephen Michael J 2020B, Stern Martin 2011, Stern Robert 1972, Stern Robert + Cleveland team I 1976. Stephen Stick 2012 (in Mott 2012), Stephenson Anne 2017, Still George Frederick 1918, Stocks Janet 2012, Stoltz David 2018. Strandvik Birgitta 2001, Strang Abigail 2017, Strassie Camila 2019, Sturgess Jennifer 1984, Subbarao Padmaja 2013, Sugunaraj Jay 2019, Sullivan Jillian 2020A, Summerhayes Donna & Doug 1959, Super Maurice 1994, Svodova Elizabeth 2020.
Taccetti Giovani 2019, Takemoto Clifford BI 2012, Talbot Nick 2020, Tang (Edward) Yinghua 2020B, Tangpritcha Vin 2019, Taussig Lynn BI 1973, Taylor Chris BI 1988, Taylor-Cousar Jennifer BI 2015, 2017, 2019, 2020B, Taylor-Robinson David 2019, Tomati Valeria 2018, Taylor-Robinson 2015, Tempany Eddie BI 1982, Tepper Leoni 2016, Thaker Vidhu BI 2015, Thomson John BI 1904, Thanikkel Leo 2020B, Tiddens Harm BI 2012, Toledano Mirabelle 2019, Toprak Demet 2019, Tong Katherine 2020, Tramper-Strander Gerdien BI Antibiotic Topic 2010, Trapnell Bruce BI 2012, Travert G 1981 & 2020B, Treggiari Miriam BI Antibiotic Topic 2009, Trimble Aaron 2018, Tsui Lap Chi BI 1985, 1989, Tucker Ron BI 1962, Tullis Elizabeth BI 2000 (in Mitchell 2000) & 2019, Tummler Burkhard BI 2000, Turkovic Lidijat 2020B, Tyrrell Jenny BI 1986.
Ulph Fiona 2015
Van Devanter Donald (“Dutch”) 2019, Valerius Henrik 1991, Valman Bernard 1969, van Biervliet Stephanie 2020B, Vandebrouck Clarisse 2020B, van der Ent CK BI 2006 (in van Ewijk et al), van de Peppel 2018, van Heynigen Veronica 1987, van Konigsbruggen-Rietschel Silke 2016, van Straten Marcel 2019, Vanstone Michelle 2005, Varrassi Giustina 2019, Vavrova Vera 1999, Velt Guido 2020, Verkman A 2016, Verma Ishwar 2020B, Vermeulen Francois 2017, Vidmar Suzanne 2020B, Villella Valeria 2018, Voldvy Christian 2020B,
Wagener Jeff 1995, Wainwright Brandon 1985, Wainwright Claire 2008, Walker Seth 2019, Walicka-Serzysko Katarzyna 2019, Walker-Smith John 1989, Walkowiak Jaroslaw 2005, Wallis Colin 1997, Wallwork John 1987, Walshaw Martin 1998 (in Ledson 1998) & 2019, Walters Mike 1981, Walters Sarah 1993, Waring William 1967, Ward Nathan 2019, Wark Peter 2020B, Warner J 1991, Warwick Warren 1991, Waterer Grant 2020B, Waters Valerie 2015,2017, Weaver Lawrence 1994, Webb Kevin 1998 (in Mahadeva 1998), Weber Heinrich 2017, Weber Andrew 2020B, Weibel Martin Future Fig 19, Weller Peter 1991 (in Chatfield 1991), Welsh L 2014, Welsh Michael (in Rich 1990), Westwood Tony B 2007 (in Topics), White Ray 1885, Wildman Martin 2019, Widger John 2016, Wigglesworth FW 1946, Wijker Naomi 2020B, Wilcken Bridget 1983, Wilder-Smith 2015, Williamson Robert (Bob) 1991, Wilmott Robert W 2016 (in Future), Wilschanski Michael 2000, Wilsey Michael 2020A, Wilson John 2017, Wine Jeffrey 2010 & 2019, Winstanley Craig 2019, Witt Michael 2018, Witters Peter 2019, Woestenenk J W 2015, Wohl Mary 2000, Wolbach Simeon 1932, Wolman Irving 1942, Wood Robert 1976, 1988, Woodruff Samantha 2017, Wong Amy 2012, Wong Susan 2019, Wright Martin 1959, Wu Hao 2018.
Yacoub Magdi 1985, Yadav Hemang 2016, Yankaskas James 2001, Yassa Jeanette 1979, Yen Elizabeth 2013, Yeung Jonathan 2020, Young Winifred 1960 & 1965 Young Sarah 1969, Yan Jennifer 2020, Yen Elizabeth 2013
Zabner Joe 1993, Zach Maximillian BI (in Heinzl 2002), Zamanick Edith 2019, Zamboli Marco 2016, Zangen David 2020A, Zar Heather 2016, Zarei Keyan 2020B, Zeitlin Pamela 2004, Zenanick Edith 2015, Ziosnik James 2020B, Zangen David 2020, Zlotogora Joel 2015, Zuelzer Wolf B 1949, Zysman-Coleman Zofia N 2020B.