Frequently Asked Questions
What does "Multiplex" mean?
Families where 3 or more first degree relatives are diagnosed with Crohn's or Ulcerative Colitis are known as "Multiplex" families.
Why is the Registry called the "Nixon" Twin and Multiplex Registry?
Professor Nixon was the Grandfather of Dr Marcus Harbord, the Principal Investigator of the registry. He was also a doctor and a keen academic. The registry has been named after him to honour his memory and contribution to science.
Can I join even if my twin doesn't want to?
We would like to hear from you. However if your twin does not want to be a part of the database we will only ask you about your own health and disease patterns. You are not able to consent on behalf of your twin.
I am a non identical/dizygotic twin - can I join the registry?
Yes, we are recruiting both monozygotic (identical) and dizygotic (non identical) twin pairs.
I am a twin with IBD but my twin is not affected. Can I join the registry?
Yes, we are recruiting both concordant and discordant twin pairs (pairs where both or only one twin is diagnosed with IBD).
I took part in the twin study and registry conducted by Prof Pounder and Mr Andrew Wakefield at The Royal Free Hospital in the 1990s. Will my details automatically be included in this updated registry?
No. As so much time has passed we are not presuming members of the Royal Free database are happy to be part of this current registry. When possible, we are tracing members to invite them to participate. If you would like any further information about this please do not hesitate to contact us.
I am a twin with Irritable Bowel Syndrome (IBS) - can I join the registry?
No. The registry is only for sufferers of Inflammatory Bowel Disease (Crohn's Disease, Ulcerative Colitis or Indeterminate Colitis).
If I join the registry who will be able to access my information?
We value your privacy; only staff directly involved with the registry will have access to your personal details. All staff have undergone training in confidentiality and clinical research. The design of the registry has been assessed and approved by an independent ethics committee. If we were to publish or release information for research purposes it would be fully anonymysed.
I am under 18, can I join the registry?
Yes, as long as a parent or guardian is happy for you to participate, you are able to join.