Welcome to the Inflammatory Bowel Disease Nixon Twin and Multiplex Registry Homepage.
The role of twins in understanding disease was first noted by Dr Francis Galton in 1875. Since then twin studies have enhanced our understanding of all areas of medicine. Crohn's Disease and Ulcerative Colitis are no exception. Twins provide us with a rare insight into the relative importance of genetic and environmental factors. "Multiplex" families, where three or more relatives have a diagnosis of Inflammatory Bowel Disease (IBD), have also been invaluable in understanding genetic components to these diseases.
In recent years our understanding of IBD has greatly increased. 163 regions of DNA associated with IBD have been identified. We just are beginning to understand the ecosystem of bacteria within the gut, known as the microbiota, and its role in health and disease. There is also evidence the structure and regulation of our genes change throughout the course of our lives, a phenomenon known as epigenetics. Unfortunately our knowledge is still incomplete. We hope that by further studying twins and Multiplex families we will make more scientific discoveries which will ultimately pave the way to new treatment options. As such we are developing a Nationwide Inflammatory Bowel Disease Twin and Multiplex Registry.
The registry holds information regarding lifestyle and medical history of its members. From time to time we invite members to participate in research projects.
If you are a twin with IBD or from a Multiplex family, and would like further information about the registry please click here.
If you are a clinician who would like to refer patients who may be interested in joining the registry please click here.
About the Project
The IBD Nixon Twin and Multiplex Registry is an International research project with the aim of enhancing our understanding of Crohn's Disease, Ulcerative Colitis and Indeterminate Colitis. Our ultimate goal is to learn more about Inflammatory Bowel Disease such that we can develop new strategies for prevention, early diagnosis and management of these debilitating conditions.
The registry is led by a team of gastroenterologists with a specialist interest in caring for patients with Inflammatory Bowel Disease. Dr Marcus Harbord leads the UK branch of the registry and Prof Siew Ng leads a similar registry in Hong Kong. As well as providing fantastic clinical care, both were keen to develop a longstanding research resource to help understand more about why these diseases develop. Both have an extensive record of publishing in this area.
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. The database was rediscovered in 2010, at which point Dr Marcus Harbord took over its upkeep. It was at this point the value of having an up to date twin registry was realised. As such we are contacting twins within the original database as well as recruiting new twin pairs and multiplex families.
The incidence of Inflammatory Bowel Disease is much lower in Asia 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 for a microbiome study. We are very grateful to our funders for their support of our work.
News & Updates
Inclusion of young people and children within the IBD Nixon TAM Registry
It was brought to my attention by parents of children with IBD that there were many people aged under 18 who were keen to get involved
with IBD research. Therefore the registry has been expanded to include children and young people. If you are a young person interested in
taking part, or the parent/guardian of a child who is eligible to join the registry, we would be delighted to hear from you.
IBD Nixon Twin and Multiplex Biobank
The biobank will establish a long term research resource which will help facilitate scientific discoveries that help us to further understand
why some people develop Inflammatory Bowel Disease. This will ultimately pave the way for new diagnostic tests as well as
prevention and treatment strategies.
We are very grateful to UK Crohn's and Colitis for awarding us with a research grant to undertake a study of the microbiota.
We anticipate we will be recruiting for this study early in 2014 - at this time we will publish more details.
The Role of Twin Studies in IBD Research, Presentation by Dr Hannah Gordon
"The IBD Nixon Twin and Multiplex Registry is an International research project with the aim of enhancing our understanding of Crohn's Disease, Ulcerative Colitis and Indeterminate Colitis"