Children and Young People with IBD
Following the interest of parents and young people with Inflammatory Bowel Disease, we have expanded the IBD Nixon Twin and Multiplex Registry to include all age groups.
Approximately 25% new cases of Inflammatory Bowel Disease are diagnosed in people under the age of 20. Children as young as 2 years old have been diagnosed with colitis. Young people with early onset IBD are particularly likely to have family members who are also affected.
Young people may suffer from the same symptoms as adult patients with IBD. However they also face additional challenges, such as problems with growth and delayed puberty. It is also tough to have normal childhood and teenage years whilst managing a chronic disease.
The IBD Nixon Twin and Multiplex Registry has been working with Dr John Fell, Consultant Paediatric Gastroenterologist, to make sure we maximise the impact this research will have in understanding what causes IBD in children. We have also had support from CICRA who are kindly also advertising our work.
You or your children are eligible to join the registry if:
- You are a twin and one or both of you has Crohn's Disease or Ulcerative Colitis.
- You are from a family where three or more first degree relatives have been diagnosed with Crohn's Disease or Ulcerative Colitis.
Joining the registry involves answering a questionnaire about your health and allowing us to access their medical records. As with adults in the registry, we will from time to time invite you to take part in research projects. Information about joining the registry is available below:
- Participant information leaflet for parents of children under 7
- Participant information leaflets for parents and for children age 7-11
- Participant information leaflets for parents and for young people age 12-17
If you are a young person with Inflammatory Bowel Disease, or if you are a parent of children eligible to join, please click here to contact us - we would love to hear from you.
Alternatively you can contact our research team to ask any questions.