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Welcome to our new and first E-Bulletin

 

December 2010

E-bulletin 1

  
 


We propose to e-mail this bulletin as it is produced from time to time to all those who have registered for the bulletin on our website (www.barrettscampaign.org.uk/ebulletin).

In addition the e-bulletin will be available on our website via a link for those who have not been sent it and wish to see it. Click here to view.

We would like to inform you of progress concerning Barrett's oesophagus, latest important research, new available treatments and where they can be obtained, and how you may be able to help combat the aggressive cancer that may develop from Barrett's oesophagus.

We will do our best to use a minimum of medical jargon when we describe medical advances.

First however: What is Barrett's Oesophagus Campaign doing.

  
 

1.

Supporting the UK Barrett's Oesophagus Registry (UKBOR)

UKBOR 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. Whilst Barrett's Oesophagus is the predominant precursor lesion, only a small proportion of Barrett's patients (less than 10%) 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.

UKBOR has the largest database of Barrett's oesophagus sufferers in the world and has used this wealth of information to do ground breaking research on risk factors for both Barrett's and its related cancer. This has included the impact of demographic and lifestyle factors, different treatments, variation in surveillance practice of Barrett's patients, relationship between segment length and adenocarcinoma, the pattern of mortality in Barrett's patients, blood group distribution, the implication of infection by Helicobacter pylori etc.

The findings of research from UKBOR can be found in its publications but some are summarised below. (A link to UKBOR publications is provided here).

Over the past 20 years people have been diagnosed with Barrett's at a younger age and men have a greater tendency to get Barrett's oesophagus than women, get it slightly younger and have a higher risk of it progressing to cancer. Alcohol and tobacco do not appear to increase the risk of getting Barrett's but smoking may increase the risk of Barrett's progressing to cancer. Obesity on the other hand, makes people more at risk of getting Barrett's but does not increase the risk of cancer further than the Barrett's itself. The risk of Barrett's progressing to cancer increases if the length of the Barrett's segment is over 7 cm.

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 particularly noteworthy. 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% 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 the research from UKBOR 3 centres in the USA (Harvard, the Mayo Clinic and John Hopkins University) and UKBOR are exploring collaborative studies.

UKBOR has also been a model for a number of Registries throughout Europe and was a co-organiser of a workshop on Barrett's Registries organised by Professor Zaninotto of Venice and organiser of a Session on Barrett's Registries at the 10th World Oeso Conference in Boston. (click for further details)
 
 

2.

Patient Support Service

The charity provides a 'Friends of BOC' service where we encourage patients, their families or friends to set up a local support group in their area which can meet from time to time for the purpose of discussion, fellowship and local fundraising. There are no subscriptions involved and membership is free to all. We can normally introduce a new group to the local Consultant who has an interest in Barrett's. For our part we provide support in the form of leaflets, exhibition stands, a website where the local groups are represented, and an information service including a 'patient's forum' on our website which is an area for active discussion. We are also able to introduce and invite patients with Barrett's or those who have had cancer surgery (for example) to attend a number of governmental and NGO meetings where they can contribute if they so wish. Where we are able we also offer a member of our board to attend local meetings by invitation.

A good example of a support group is Barrett's Wessex.

Inaugurated in June 2009 the group has been recently named Barrett's Wessex with the objectives of raising awareness, providing support and raising funds.

Barrett's Wessex presently has upwards of 100 members with free membership open to anyone who supports their aims. By registering their details, Barrett's Wessex can provide them with news of events organised in the Wessex area.

Barrett's Wessex has set themselves the target of raising funds to purchase a HALO device for Southampton (for non-surgical treatment of severe Barrett's). At £33,500, this appeared rather daunting but less than 18 months on, they have raised over £21,000 and the target is well within their sights. BOC have also made a donation to their cause.

The money has been raised by sponsored cyclists travelling from Land's End to John O'Groats and across France, a draw, donations and sales of a recipe book: "Cool Food", a compilation of tasty recipes that have worked for heartburn sufferers, and has gained an endorsement from the Italian celebrity chef, Aldo Zilli.

Next year one of their members plans to cycle 3000 miles across Australia. Hopefully this event will generate not only publicity and funds for their appeal but also public awareness of the condition.

Barrett's Wessex provides informal "drop-by" coffee afternoons once a month at a local garden centre where anyone can drop by for a chat about Barrett's and related issues.

Chris Robinson (secretary, Barrett's Wessex)

For further information, to join Barrett's Wessex, or to order Cool Food, please email barretts@chrisrob.co.uk or visit the Barrett's Wessex website: www.barrettswessex.org.uk or www.barrettscampaign.org.uk

Medical Advisers

As part of BOC's support service we have a Medical Advisory Board consisting currently of 3 acknowledged practising Consultant Gastroenterologists with special interest and expertise in managing Barrett's oesophagus patients and those with cancer of the oesophagus (gullet).

They are:

Dr Praful Patel MD, FRCP
Consultant Gastroenterologist/Honorary Senior Lecturer
Southampton University Hospitals Trust
Email: Praful.patel@suht.swest.nhs.uk

Dr Jonathan Hoare MA PhD FRCP
Consultant in Gastroenterology and General Internal Medicine
St Mary's Hospital, Imperial NHS Trust
Honorary Senior Lecturer, Imperial College School of Medicine
Clinical lead for endoscopy at St Mary's Hospital, London

Dr Charles Murray MA PhD MRCP
Consultant in Gastroenterology and General Internal Medicine
Royal Free Hospital NHS Trust
Clinical lead for endoscopy at The Royal Free Hospital, London

These consultants may be called on by the charity to answer certain medical queries that require a practising gastroenterologist, although most queries concerning Barrett's can be answered by our information e-mail service at: info@barrettscampaign.org.uk, on our patients forum with appropriate links on our website: www.barrettscampaign.org.uk/forum or via our helpline at:
020 7472 6223
 
 
 
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To find out more about the Campaign's work, or the services they offer, please contact:
The Barrett's Oesophagus Campaign, UCL, Division of Surgery and Interventional Science,
Royal Free and University College Medical School, Rowland Hill Street, London NW3 2PF
Tel: 020 7472 6223 Fax: 020 7472 6224
Email: info@barrettscampaign.org.uk www.barrettscampaign.org.uk
Registered Charity number 1127495