Childhood Disintegrative Disorder Surveillance Study (CDD-SS)
Research type
Research Study
Full title
Childhood Disintegrative Disorder Surveillance Study (CDD-SS)
IRAS ID
184994
Contact name
Michael Absoud
Contact email
Sponsor organisation
Nottingham University Hospitals NHS Trust
Duration of Study in the UK
3 years, 0 months, 31 days
Research summary
Childhood Disintegrative Disorder (CDD) is a rare condition where a previously normal child very rapidly, sometimes even over a few days, loses intellectual and developmental skills. Children then stop communicating and playing with other children, and cannot look after themselves, often resembling a severe form of Autism. At present, we do not know what causes this devastating condition. Approaches to investigate and manage this condition vary between clinicians, leading to confused messages to parents and carers, adding to the distress already encountered from grieving the loss of a previously healthy child.
To begin to unravel such rare conditions, we first require knowledge on the number of new cases of CDD per year, the true spectrum of children with such presentation, how they are investigated and cared for, and crucially, their outcome. Here we propose a study utilising the infrastructure of two established and highly successful national surveillance units (British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System) to identify and acquire such information. To our knowledge, there have been no studies of the number of new cases of CDD per year either in the UK or internationally; we hope to rectify this with the proposed study. The BPSU and CAPSS use a system whereby Consultant Paediatricians and Psychiatrists are asked to report cases they have seen in the last month. A questionnaire is then sent to the reporting clinician to gather information on the specific case. We will analyse the information collected to help inform on the optimal delivery of appropriate services, support, and interventions for affected children and families.REC name
London - Bloomsbury Research Ethics Committee
REC reference
16/LO/0799
Date of REC Opinion
13 Jun 2016
REC opinion
Favourable Opinion