Trial History

In 1989 we were part of the research community involved in discovery of the APC gene.  Spelling mistakes in this gene can run in families and cause Familial Adenomatous Polyposis or FAP.  Carriers of these faulty genes develop hundreds of polyps, little lumps, in the lining of the bowel during their teens.  This can lead to cancer developing at a young age.  To prevent this, an operation is offered when they reach adulthood, to take out the colon.  We began to think about different ways to treat gene carriers to prevent these polyps developing or at least slow the process down.  This would be important for the families affected and for the rest of the population because it had just been shown that the APC gene is also faulty in most of the colon cancers which develop in the general population.  The difference is that in FAP, every cell starts with one faulty copy and only needs to make one mistake to develop into a polyp. In most people, the same cell must pick up two copying mistakes to start to develop into a cancer so it happens much later in life. We suggested that if we could slow down polyp formation in young people with FAP, it would probably be helpful to the rest of us too.

The European Union had started to offer grants to help European research groups interact.  These grants were called Concerted Actions so we called the new programme

Concerted Action Polyposis Preventionor or CAPP for short. 

The project started in 1993.  At the end of that year, our international research community discovered that many families with inherited patterns of cancer where there were only occasional polyps had problems with their mismatch repair genes.  At the time we called this disorder hereditary Non-Polyposis Colon Cancer or HNPCC.  We now prefer the term Lynch syndrome, partly because it was soon obvious that there were other cancers, particularly of the womb in women who carried a faulty mismatch repair gene.

So we started planning a new project.  The prevention study in FAPP became CAPP1 and the new project would be called CAPP2 (CAPP2 Protocol). We wrote another successful grant to Europe under or new title

Concerted Action Polyp Prevention

The new grant ran from 1996 to 1999 when recruitment to CAPP2 began.  By this stage we were applying for funds to our national cancer and general medical research charities so we decided to change the name again but continue to call it the CAPP programme.  The letters were then used to stand for

Colorectal Adenoma/carcinoma Prevention Programme

On the 28^th October 2011 the main result of CAPP2 trial showed that aspirin reduced the risk of colorectal cancer in people with Lynch syndrome. It also reduced the number of other cancers such as cancer of the womb.  A new trial will explore whether a small dose of aspirin is as effective as the bigger dose used in CAPP2.  The new trial will be called CAPP3.  Other studies under our banner are also under development.  We are looking for funds to investigate prevention of cancer in inflammatory bowel disease and in the general population where there is a family history of cancer but the faulty gene is not known.  To make CAPP relevant to all these new projects the name will change again, for the last time.  From now on CaPP stands for Cancer Prevention Programme.

InSiGHT

InSiGHT stands for International Society for Gastrointestinal Hereditary Tumours. It was officially formed in 2003 at a joint meeting of two international research groups with overlapping interests.  The Leeds Castle Polyposis Group studied people with genetic causes of multiple bowel polyps, especially Familial Adenomatous  polyposis or FAP.  The International Collaborative Group on HNPCC was set up to help find the genes underlying hereditary forms of cancer which did not involve the development of lots of polyps.

The first official meeting of the society took place in Newcastle upon Tyne in 2005 when more than 400 doctors, nurses, counsellors,research scientists and students gathered to share ideas over four days.  The society now meets every 2 years.  In 2007 we met in Yokohama, Japan.  In 2009 we met in Dusseldorf, Germany and in 2011 we met in  San Antonio, Texas.  The 2013 meeting will be in Australia.