History of the Registry
Back in the 1990s a team of researchers at the Royal Free Hospital lead by Prof Pounder put together a database of UK twins with Inflammatory Bowel Disease. They recruited by surveying members of The National Association for Colitis and Crohn's Disease. 264 pairs of twins responded. A paper published demonstrated that rates of concordance (both twins being affected) were higher in identical (monozygotic) twins than non identical (dizygotic).
The database itself lay dormant for several years. However it was rediscovered in 2010, at which point Dr Marcus Harbord took over its upkeep. The data from the original twin pairs was re-analysed, and trends suggesting links between genetics and patterns of disease were suggested. The study also suggested a link between childhood disease and development of IBD.
It was at this point the value of having an up to date twin registry was realised. As such we are re-establishing the database. We are attempting to contact twins within the original study, as well as recruiting for new twin pairs and multiplex families.
A similar registry is housed in Hong Kong, The IBD Nixon Twin and Multiplex Hong Kong Registry. (www.hkibdr.com). The incidence of Inflammatory Bowel Disease is much lower than in Western Europe, although it is increasing over recent years. The close partnership between the registries will facilitate international research collaboration, and allow comparative studies between UK and Asian populations.
Both the UK and Hong Kong branches of the IBD Nixon Twin and Multiplex Registry are funded by the Jesse and Thomas Tam Foundation. We have also received a grant from UK Crohn's and Colitis.
(Thompson N, Driscoll R, Pounder R, Wakefield A. Genetics versus environment in inflammatory bowel disease: results of a British twin study. BMJ 1996)
(Ng S, Woodrow S, Patel N, Subhani J, Harbord M. Role of genetic and environmental factors in British twins with inflammatory bowel disease. Inflammatory Bowel Diseases, Volume 18, Issue 4, pages 725-736, April 2012)