BPSU - Childhood Disintegrative Disorder

Surveillance of childhood disintegrative disorder (CDD) commenced in November 2016. The study will provide important information regarding the number of new cases of CDD in the UK and RoI; the clinical presentation management of those with CDD; provide information on current investigative and management approaches; and allow a better understanding of short-term outcomes of those with CDD. Surveillance is being run in paralell with the Child and Adolescent Psychiatry Surveillance System (CAPSS).

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MAbsoud_Headshot.jpg

Lead investigator

Dr Michael Absoud
St Thomas' Hospital, 
Westminster Bridge Rd, 
Lambeth, 
London SE1 7EH

Overview

Childhood Disintegrative Disorder (CDD) is a rare condition in which a previously typically-developing 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. The present study will seek to identify the incidence of CDD, presenting features, investigative and management approaches, and short-term outcome.

Case definition

Please report any child seen in the last month who meets the case definition of childhood disintegrative disorder in the UK or the RoI.

Child must meet criteria A to E:
 
A. Apparently normal development for at least the first 2 years of life after birth in children up to 10 years of age
 
B. A definite and persistent loss of previously acquired skills in: expressive or receptive language; play skills; adaptive behaviour and functional skills
 
C. Qualitatively abnormal social functioning, manifest by: qualitative abnormalities in social communication (of the type defined for Autism Spectrum Disorders) and restricted, repetitive and stereotyped patterns of behaviour, interests and activities, including motor stereotypies and mannerisms.
 
D. The disorder is not attributable to: acquired aphasia with epilepsy; selective mutism; schizophrenia; Rett Syndrome; neurodegenerative diagnosis; acquired brain injury.
 
E. Absence of new abnormal neurological signs on examination (hence not meeting criteria for the BPSU-PIND study).

Duration

November 2016 to November 2017 (13 months). Follow-up until November 2019 (at 12 months and 24 months).

Funding

This study is being funded through a grant from The Shirley Foundation

Ethical approval

This study has been approved by London Bloomsbury REC (REC reference: 16/LO/0799) and has been granted Section 251 HRA-CAG permission (CAG Reference: 16/CAG/0061).

Support group

Further information