The UK National Barrett’s Oesophagus Registry
Professor A Watson, co-founder and Director 2000-2007, writes
The UK National Barrett’s Registry (UKBOR) is a database that contains information on many thousands of patients with Barrett’s Oesophagus, registered by gastroenterologists throughout the UK.
The Registry was established in 1996 as a joint initiative of the Oesophageal Section of the British Society of Gastroenterology and the European Cancer Prevention Organisation. The stimulus for this was the rapidly increasing incidence of adenocarcinoma (AC) of the oesophagus, now ten times more common than it was 30 years ago.
While Barrett’s Oesophagus is the predominant precursor lesion, only a small proportion of Barrett’s patients (fewer than 10 per cent) will develop AC and the aim of UKBOR was to facilitate studies on the characteristics of patients with Barrett’s, the natural history of the condition, which patients are at greatest risk of AC development and therefore need closest follow up, and the effect of various treatments for Barrett’s including pharmacological, endoscopic and surgical treatments.
Because it is difficult for individual groups of researchers to conduct these studies due to the small numbers of Barrett’s patients seen in individual centres, it was felt that the way forward was that followed in the case of other relatively uncommon yet important conditions, of establishing a national database of cases registered by motivated gastroenterologists.
UKBOR is located in the University Department of Surgery at the Royal Free Hospital, London. It is staffed by a part-time registrar with an epidemiological background (Dr CPJ Caygill) and is overseen by an Honorary Medical Director (previously Dr PI Reed and Prof A Watson; currently Prof MC Winslet).
UKBOR has no dedicated funding, being maintained in the early days by money raised by the medical directors and, more recently, by the Barrett’s Oesophagus Foundation – renamed Barrett’s Oesophagus Campaign in 2009 – which was established in 1999 with the objectives of supporting UKBOR, establishing patient support groups and services and funding research.
The Foundation has raised more than £60,000 from grant-awarding bodies, which have stipulated that these grants are specifically to support UKBOR and these monies have been ring-fenced within the Foundation’s accounts. A series of research grants has augmented this core funding and facilitated the employment of research fellows to increase the research output from UKBOR.
Currently, the UKBOR database contains information on more than 12,000 Barrett’s patients, registered by gastroenterologists from 44 UK centres. More detailed information on patient characteristics, results of investigations, follow up and treatment employed has been obtained in almost 3,000 of these by Registry staff and research fellows visiting individual centres and abstracting and databasing detailed information from patients’ medical records.
This considerable achievement is despite a temporary embargo on registrations in 2004 due to the Patient Information Advisory Group (PIAG) declining exemption from Section 60 of the Health and Social Care Act, which meant that patient consent had to be obtained in order to register patients with UKBOR.
Registrations were resumed in 2005 with consenting patients, although at a slightly reduced level because of the extra workload on gastroenterologists in obtaining consent. However, despite these constraints, at a workshop convened in Venice in 2007 for European Barrett’s Registries, it emerged that UKBOR was the largest and most advanced of the eight European Registries. It is also larger than any of the four USA Regional Registries, making it the largest Barrett’s registry in the world.
UKBOR has been enormously successful and has achieved an international reputation by virtue of the 27 studies it has performed, resulting in 40 presentations at national and international conferences and 22 publications in international peer reviewed journals. (See Publication list).
Several of its presentations at international conferences have been awarded distinctions, depicting the fact that these studies have been ranked in the top 10 per cent submitted from around the world. Our two Research Fellows, Piers Gatenby and James Ramus, have each been awarded MD degrees by the University of London based on their research work in UKBOR performed under the supervision of Prof A Watson and Prof MC Winslet.
Although the initial studies fulfilled our original intention of being epidemiological and relating to demographics of Barrett’s patients, we recognised with the intervention of PIAG that complete UK coverage was unlikely without significant additional funding and that UKBOR represented the largest published cohort of Barrett’s patients in the world. This conferred scientific and statistical credibility on its subsequent studies related principally to natural history of Barrett’s and risk factors for AC development, a fact confirmed by the large number of publications and presentations.
In attempting to summarise the most noteworthy achievements of UKBOR, two studies presented at the International society for Diseases of the Oesophagus and the World Congress of Gastroenterology and subsequently published in international journals are worthy of mention.
The first showed for the first time that the risk of AC development in so-called ‘short segment’ Barrett’s was similar to that in conventional longer segment disease. The importance of this was that both in UK and USA it was believed, on the basis of small series, that short segment Barrett’s conferred minimal AC risk and therefore surveillance of such patients was unnecessary.
The second study related to a histological abnormality seen in many Barrett’s patients called Intestinal Metaplasia (IM). In USA and many parts of Europe it is believed that only patients showing IM are at risk of AC development and should undergo surveillance. The UKBOR study, on account of its large numbers, was able to demonstrate firstly, that 34 per cent of Barrett’s patients do not demonstrate IM at diagnosis and secondly, that the risk of AC development is similar whether or not IM is demonstrated at diagnosis.
Both of these studies have influenced patient management in the UK in recommending that patients with short segment Barrett’s and those without IM should be enrolled in surveillance programmes where these are practised.
As a result of this latter study, contact was made from Harvard University, USA, firstly to congratulate UKBOR on publication of this study and secondly to seek the collaboration of UKBOR in a joint study with Harvard. Harvard has developed a technique called image cytometry, which detects DNA abnormalities in archived histological material from Barrett’s patients.
It has made two important discoveries using this technique. The first is that it has been shown in a small series to predict very accurately which Barrett’s patients are at risk of AC development. Importantly, this prediction occurs very shortly after diagnosis of Barrett’s, at a time when AC can be prevented. The second, again in a small series, is that Barrett’s patients, with and without IM, have a similar proportion of DNA abnormalities and that it is these, rather than the presence of IM, which determines AC development.
It is believed that with UKBOR’s unique resource of information on a very large number of Barrett’s patients and access to histological material on a significant number of patients who have progressed to AC, both of these hypotheses can be evaluated on a sound scientific and statistically valid footing. Protocols for these studies have been produced, application for UK Ethics and R&D approval is being sought and there is confidence from Harvard that funding may be forthcoming from the American National Institutes of Health.
In conclusion, UKBOR has a strong record of achievement despite its modest funding and staffing levels. It comprises a precious resource that is recognised internationally and is poised, with the Harvard and other proposed studies, to continue its achievement well into the future. With appropriate funding and staffing, it is capable of achieving much more.
Our current collaborative study with Havard University can be viewed here.
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