DSRD- a Delphi survey version 1.0
Research type
Research Study
Full title
Down Syndrome Regressive Disorder (DSRD)- a Delphi survey using online questionnaire among children and young person with Down Syndrome in the United Kingdom.
IRAS ID
342907
Contact name
Ella Rachamim
Contact email
Sponsor organisation
Royal Free London NHS Foundation Trust
Duration of Study in the UK
0 years, 1 months, 13 days
Research summary
To identify the incidence of Down Syndrome Regression in children and young people with Down Syndrome in the United Kingdom.
Down Syndrome Regression Disorder is a cluster of symptoms causing acute regression in previously acquired skills or behaviour without a clear cause. The knowledge of this condition is increasing in the recent years with therapeutic options being currently being trialled.
The exact incidence of this condition in the United Kingdom is lacking although we have identified a few case series. This study will therefore help in identifying the exact incidence of Down Syndrome Regression in children and young people with Down Syndrome through a series of questionnaire. All children and young people from 10 years to 40 years with a diagnosis of Down Syndrome will be included in the study. All professionals and carers looking after the above population will be eligible to take part in the questionnaire survey.REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
24/NW/0187
Date of REC Opinion
11 Jul 2024
REC opinion
Further Information Favourable Opinion