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The Royal College of Psychiatrists Improving the lives of people with mental illness

 

Current studies

Child & Adolescent Psychiatry Surveillance System

Childhood Disintegrative Disorder (CDD)

  • The Childhood Disintegrative Disorder – Surveillance Study (CDD-SS) will take place across the UK and Ireland; surveillance will be undertaken for 13 months from Dec 2016 to Dec 2017, followed by a 12- and 24-month follow-up period
  • Background: CDD is a rare condition in which a previously typically-developing child very rapidly loses intellectual and developmental skills resulting in impairments similar to a severe form of Autism.  There have been no incidence studies of CDD in the published literature, and studies have provided wide-ranging estimates of prevalence.  The cause of CDD has not yet been identified. 
  • Aims: To establish incidence, demographic and clinical presentation features of CDD; to provide information on current investigative and management approaches; to have a better understanding of short-term outcomes, enabling more accurate prognostic information to be shared with families, and to allow more tailored service provision for affected children; to raise awareness of CDD amongst clinicians; to enable planning of future studies of aetiology and interventions
  • Study justification: To begin to unravel such a rare and devastating condition, we first require knowledge of the true incidence and spectrum of children presenting with CDD, how they are investigated and managed, and crucially their outcome.
  • Funding: Funding for this study has been granted by The Shirley Foundation
  • Ethical approval: Ethical approval for this study has been granted by the London – Bloomsbury Research Ethics Committee, Ref: 16/LO/0799; and the Health Research Authority Confidentiality Advisory Group, Ref 16/CAG/0061

Lead Investigators: Dr Michael Absoud; Consultant in Paediatric Neurodisability, Paediatric Neurosciences, 4th Floor, Staircase D, St Thomas’ Hospital, Westminster Bridge Road, London, SE1 7EH, michael.absoud@gstt.nhs.uk; and Dr Jessica Turnbull; Consultant Paediatrician Community Child Health, Sunshine House Children and Young People’s Development Centre, 27 Peckham Road, London, SE5 8UH, jessica.turnbull@gstt.nhs.uk

Further information on the study, including the case definition and reporting instructions, are available from:


Cost-effectiveness of models of care for young people with eating disorders (CostED)

  • The CostED study is a UK- and Republic of Ireland- wide study which commenced in February 2015. It is the largest CAPSS study to date.
  • The study will identify incident cases of anorexia nervosa in young people aged between 8 and 17 years and 11 months and classify the models of care provided.
  • Follow-up data will be used to evaluate whether increased investment in community-based specialist eating disorder services would benefit young people and provide good value for money to the NHS.
  • Funded by: National Institute for Health Research (11/1023/17) and Health and Social Care Research and Development Division, Public Health Agency (Northern Ireland)
  • Approved by: King’s College London REC [PNM/13/14-105] and the Health Research Authority Confidentiality Advisory Group [CAG 4-03(PR1)/2014] under Section 251. 

Lead investigator: Sarah Byford, Professor of Health Economics, Centre for the Economics of Mental and Physical Health, King’s College London, De Crespigny Park, London SE5 8AF; s.byford@kcl.ac.uk

Further information on the study, including the case definition and reporting instructions, are available from:


Children and adolescents with ADHD in transition between children’s services and adult services (CATCh-uS)

Surveillance of Children and adolescents with ADHD in transition between children’s services and adult services (CATCh-uS) is due to commence in November 2015. This project focuses on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) when they are too old to stay with children’s services. Little is known about how many areas have specialist services for adults with ADHD and how many young people need to move to them when they are too old for children’s services. 

Lead investigator Professor Tamsin Ford, University of Exeter Medical School, South Cloisters, St Luke’s Campus, Exeter EX1 2LU; t.j.ford@exeter.ac.uk

Overview

This project focuses on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) when they are too old to stay with children’s services. We know little about how many areas have specialist services for adults with ADHD and how many young people need to move to them when they are too old for children’s services. Until the late 20th century, ADHD was a controversial diagnosis. Once generally accepted, it is seen as a developmental disorder of children, and so mental health services for adults are not set up to manage young adults who have ADHD and continue to want support to cope with their lives.

There are National Institute for Health and Care Excellence (NICE) guidelines about the management for ADHD in adulthood, and this often involves taking medication that General Practitioners feel inexperienced to prescribe without support from specialists, as happens with children. Existing work suggests that young people with developmental disorders like ADHD are particularly likely not to transfer to adult mental health services, there has yet to be an in depth study of this issue in the UK. This will be the first national study to examine how many young people are in need of services for ADHD as adults. We will also explore how current service users and service providers experience this transition.

This project consists of 3 streams: 1) a 6 month surveillance study of young people with ADHD; 2) a qualitative study to explore the views and experiences of service users; 3)  a mapping study that will combine information about the location of services from the surveillance and interviews with email/postal surveys of service commissioners, providers and key service user groups.

Case definition: Please report any young person with ADHD taking medication for ADHD seen by you for the first time in the 6 months preceding the young person reaching your service’s age boundary. Please report any case even if you believe the case may have been reported from elsewhere.

This includes any:

  • Young person with a clinical diagnosis of ADHD under the care of CAMHS, who is reviewed for the first time when within six 6 months of reaching the services’ age boundary, whatever this may be. Young people should only be reported once and those that have already been seen and reported in this time-scale should not be reported a second time.
  • Young person who is considered to require continued drug treatment for their symptoms of ADHD after crossing the service age boundary.
  • young person who has not previously been reported to the BPSU in relation to the current study.
  • Young person with ADHD and comorbid diagnoses, including learning / developmental disabilities, should be reported only if it is their ADHD for which on-going drug treatment in adult services is required. 

Exclusion criteria:

  • Young people with a past / current history of ADHD but who do not require medication for their ADHD.
  • Young people with past / current ADHD who are not currently taking medication for their ADHD
  • Young people with past / current ADHD who require transition to adult mental health services in relation to comorbid difficulties but not require or take current drug treatment for their ADHD.
  • Young people who have been reported previously to the BPSU in relation to the current study. 
  • Young people who transition from paediatric services to CAMHS under the age of 18.

Duration

November 2015 to April 2016 (6 months of surveillance with a possible extension to 13 months depending on case numbers), Follow-up until January 2017 (9 month follow-up).

Funding

National Institute for Health Research

Ethical approval

This study has been approved by NRES Committee – Yorkshire & Humber – South Yorkshire Research Ethics Committee (REC reference: 15/YH/0426) and has been granted Section 251 HRA-CAG permission (CAG Reference: 15/CAG/0184).

Support groups

UK ADHD Network (UKAAN) and Adult Attention Deficit Disorder UK (AADD-UK)

Further information on the study, including the case definition and reporting instructions, are available from:

CAPSS partners: BPSU and University of Exeter

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