ROHHAD BPSU Survey
Research type
Research Study
Full title
Rapid Onset Obesity, hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD) British Paediatric Surveillance Unit (BPSU) Survey
IRAS ID
338713
Contact name
Katherine Hawton
Contact email
Sponsor organisation
University Hospitals Bristol and Weston NHS Foundation Trust
Duration of Study in the UK
3 years, 1 months, 31 days
Research summary
ROHHAD is a rare syndrome which causes life-threatening obesity, trouble breathing at night, a range of hormone problems and an irregular heartbeat. Children often need masks and machines to breath at night, take hormone tablets and injections for the rest of their lives, as well as having a higher risk of getting certain types of cancer in their lifetimes.
We do not know why children get this syndrome. There is no single test for diagnosis, and it can take a long time for families to get a diagnosis. We do not yet know of any treatments that can cure the syndrome. As ROHHAD is rare, many doctors in the UK will not have heard of it.
We think that more children have this condition than is currently recognised and we want to find out how many children it affects in the UK. We urgently need to know more about ROHHAD and how patients are being cared for by doctors across the UK. We would also like to raise awareness about ROHHAD.
For a year, all senior children’s doctors in the UK and Republic of Ireland will be asked each month to record any children they have seen with symptoms suggestive of ROHHAD. We will then ask the doctors for more anonymous details of the child, family and illness and any treatment they have had.
This study will help to estimate how many children have ROHHAD, more about the condition and how it is being managed. We hope that the study will improve the chances of children getting an early diagnosis and treatment. This study could also help many children who may develop ROHHAD in the future. We will share our results from the study with as many people as possible to help improve how we care for patients with ROHHAD.
REC name
South Central - Oxford B Research Ethics Committee
REC reference
24/SC/0149
Date of REC Opinion
22 May 2024
REC opinion
Favourable Opinion