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
Non-genetic Factors in the Pathogenesis of IBD in Twins
We have successfully recruited and collected from 50 twin-pairs, 100 individuals for this study. We hope to recruit and collect from a further 50 pairs to obtain 200 samples over the next six months. The study focuses on the bacteria within our gut and the changes to packaging and regulation of DNA which occur throughout our lifetime. It involves providing a sample of blood, urine and stool, which can be collected in a single visit at your own home. We do require both twins of a pair to take part, whether they have inflammatory bowel disease or not. If you are interested please get in touch here.
Heritability in Inflammatory Bowel Disease: From the First Twin Study to Genome-Wide Association Studies
The IBD Nixon TAM investigators worked with the Danish Twin registry in reviewing the methods used to calculate heritability. The work was published in the Journal of Inflammatory Bowel Disease in June 2015. This paper has open online access and can be accessed here.
CCUK® and RSM Invited talk – Who gets IBD and why?
I was delighted to be invited to talk at the Royal Society of Medicine on “Who gets IBD and why?” at the event “Medicine and Me, Living with Crohn’s and Colitis”. The moving stories from IBD sufferers and their carers meant that I possibly learned more than I taught. The slides of my presentation, which I gave in tandem with Dr Miles Parkes, are available here. The video will be shortly available on the CCUK® and RSM® websites.
IBD Nixon TAM Newsletter:
Our first newsletter outlining our project to date has just been sent out to members of the registry. To view this please click here.
Concordance and environmental risk factors of British twins with IBD, ECCO 2015:
Data from the first 100 twin pairs within the registry was analysed and submitted to the European Crohn’s and Colitis Organisation’s International meeting. This is the largest IBD conference in the world. Out of several thousand submitted abstracts, our work was chosen as one in twenty seven abstracts to be presented in the main lecture hall in front of approximately 4000 International IBD experts. This was a fun (albeit daunting!) experience, and it is great to know so many people were interested to learn about our work. A copy of the presentation slides is available here. A video will also be shortly uploaded onto the ECCO website.
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.
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"
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