Behçet’s syndrome in children and young people in the United Kingdom

• Research type

  Research Study

• Full title

  Incidence and prevalence of Behcet's disease in children and young people in the United Kingdom - a study supported by the British Paediatric Surveillance Unit (BPSU)

• IRAS ID

  163430

• Contact name

  Clare Pain

• Contact email

  clare.pain@alderhey.nhs.uk

• Sponsor organisation

  Alder Hey Children's NHS Foundation Trust Research and Development Department

• Duration of Study in the UK

  2 years, 7 months, 0 days

• Research summary

  Behçet’s syndrome is a rare condition which can cause inflammation in many parts of the body. In particular, it can cause repeated attacks of mouth and/or genital ulcers (sores), which can sometimes occur with skin rashes, tiredness, joint pains, tummy pains, headaches or eye problems. Behçet’s syndrome can affect children although we currently do not know how children are affected.

  Aims of this study:
  1) To understand how many children in the UK are affected by Behçet’s syndrome
  2) To understand how Behçet’s syndrome affects children
  3) To understand who looks after children and how they are treated
  4) To explore the time taken from first symptoms to a child receiving a diagnosis of Behçet’s syndrome

  This study is being supported by the British Paediatric Surveillance Unit (BPSU) as well as the British Society of Paediatric Dermatologists. Every month, paediatricians and paediatric dermatologists will be asked if they have seen any possible cases of Behçet’s syndrome. If they have, they will be asked to fill in a short confidential questionnaire about the child. The study team will collect and analyse all the cases that are reported over a 13 month period. The study team are not told the names and addresses of children and families are not contacted.
  Children and families with Behçet’s syndrome have been involved in designing the study and making sure information about the study is easy to understand. The Behçet’s Syndrome Society has helped us too.

• REC name

  North West - Liverpool Central Research Ethics Committee

• REC reference

  15/NW/0035

• Date of REC Opinion

  22 Jan 2015

• REC opinion

  Favourable Opinion