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BPSU study - Childhood disintegrative disorder

British Paediatric Surveillance Unit team
Surveillance of childhood disintegrative disorder (CDD) concluded in November 2017 and is in the follow-up period of its data collection. The study will provide important information regarding the number of new cases of CDD in the UK and Ireland, 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.
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Lead investigator

Dr Michael Absoud
St Thomas' Hospital
Westminster Bridge Rd
Lambeth
London SE1 7EH
Email: michael.absoud@gstt.nhs.uk

About study

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.

Surveillance is being run in parallel with the Child and Adolescent Psychiatry Surveillance System (CAPSS).

You can download the protocol card, including references, below.

Case definition

A child must meet the criteria below:

  1. apparently normal development for at least the first two years of life after birth in children up to ten years of age
  2. a definite and persistent loss of previously acquired skills in: expressive or receptive language; play skills; adaptive behaviour and functional skills
  3. qualitatively abnormal social functioning, manifested 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 stereotypes and mannerisms
  4. the disorder is not attributable to: acquired aphasia with epilepsy; selective mutism; schizophrenia; Rett Syndrome; neurodegenerative diagnosis; acquired brain injury
  5. absence of new abnormal neurological signs on examination (hence not meeting criteria for the BPSU-PIND study).

Reporting instructions

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

Duration

November 2016-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.

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