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





CAPSS was launched in Spring 2009 with the support from the College, the Faculty of Child and Adolescent Psychiatry and importantly, the British Paediatric Surveillance Unit who have had over 20 years experience in rare disease surveillance.


CAPSS has recently published The Child and Adolescent Psychiatry Surveillance System (CAPSS):  (CAPSS) The Seven Year Report: 2016


This section provides information about how CAPSS is structured, how the system works; its commitments to confidentiality and contacts to key people. Click on each link below:




CAPSS Executive 

Tamsin Ford - Chair of CAPSS executive committee, Honorary Consultant Child and Adolescent Psychiatrist and Professor, University of Exeter Medical School, Exeter.

Adi Sharma - Vice Chair, Consultant and Honorary Clinical Senior Lecturer in Child and Adolescent Psychiatry, Adolescent Bipolar Service, Northumberland Tyne and Wear NHS Foundation Trust and Newcastle University.

Dasha Nicholls - Consultant Child and Adolescent Psychiatrist and Honorary Senior Lecturer, Joint Head of Feeding and Eating Disorders at Great Ormond Street Hospital, London; Founding Chair of CAPSS.

Cornelius Ani - Consultant Child & Adolescent Psychiatrist and Honorary Senior Lecturer - Imperial College London.

Richard Lynn - British Paediatric Surveillance Unit of the Royal College of Paediatrics and Child Health, Honorary Senior Research Fellow, University College London, Institute of Child Health, London.

Fiona McNicholas - Consultant Child & Adolescent Psychiatrist, Our Lady’s Hospital for Sick Children, Ireland.

Michael Morton - Honorary Clinical Senior Lecturer, Institute of Health & Well- being, University of Glasgow, Yorkhill, Glasgow.

Alan Quirk - Senior Programme Manager (Audits & Research), Royal College of Psychiatrists' Centre for Quality Improvement, and CAPSS Manager of Operations.

Hani Ayash - Consultant Neurodevelopmental Paediatrician and Honorary Senior Lecturer, Clinical lead for ADHD Services, Cambridgeshire and Peterborough NHS Foundation Trust, A member of the University of Cambridge Partners.

Marinos Kyriakopoulos - Consultant Child and Adolescent Psychiatrist, South London and Maudsley NHS Foundation Trust; Visiting Senior Lecturer, Institute of Psychiatry, Psychology and Neuroscience, King's College London; Adjunct Assistant Professor, Icahn School of Medicine at Mount Sinai, USA.

Udo Reulbach - Special Lecturer in Child & Adolescent Psychiatry (University College Dublin).

Priya Hodgins - Specialty Trainee, Child and Adolescent Psychiatry, Health Education North East, Newcastle.

Jaya Gupta - Specialty Trainee, Child and Adolescent Psychiatry, The Royal London Hospital and Great Ormond Street Hospital, London.

Andrew McWilliams - Academic Clinical Fellow and Specialty Trainee, Child and Adolescent Psychiatry, South London and Maudsley NHS Trust and Great Ormond Street Hospital, London.

Eleanor Smith – Consultant Child and Adolescent Psychiatrist, Complex Neurodevelopmental Disorders Service, Northumberland Tyne and Wear NHS Foundation Trust.

Adele Warrilow - Clinical Research Fellow and West of Scotland Specialty Trainee, Institute of Health & Well-being, University of Glasgow.

Blanaid Gavins – Consultant Child and Adolescent Psychiatrist, The Children’s Mental Health Clinic, Dublin.



How the unit works  

Structure: Several organisations are involved in CAPSS including:

  • the College;
  • the Faculty of Child and Adolescent Mental Health;
  • British Paediatric Mental Health Group;
  • British Paediatric Surveillance Unit (BPSU). 


The CAPSS office is housed at the CCQI and Dr Alan Quirk, Senior Research Fellow at the CCQI, is the Manager of Operations. An administrator undertakes day-to-day running of CAPSS. This post provides support to investigators in managing their projects. The CAPSS Executive Committee is chaired by Dr Tamsin Ford and oversees scientific matters. The committee reviews the applications submitted by investigators wishing to use the card reporting system.


Methodology: CAPSS uses the active surveillance methodology developed so successfully by the BPSU.


A report card, the yellow card containing a list of conditions being surveyed, is sent every month to all respondents on a mailing list. The mailing also includes reporting instructions and, where appropriate, protocols for new studies.


The reporting clinicians are asked to check boxes against any of the reportable conditions they have seen in the preceding month, or to check a "nothing to report" box if none have been seen, and return the card to the CAPSS office.


A tear-off slip is provided with the card for the psychiatrists to keep a convenient record of patients reported.


"Positive" returns are identified by the unit's administrator and then notified to the appropriate investigator, who then contacts the reporting clinician directly to request completion of a brief data collection form. Currently totalling 1000 respondents, the list aims to include all hospital, university and community paediatric consultant psychiatrists who are members of the RCPsych. The aim is to involve every senior doctor who is likely to have clinical responsibility for children with rare conditions.


For many studies, ascertainment and quality of individual case data are improved by use of other data sources such as consultant paediatricians via the RCPCH and Hospital Episode Statistics.


CAPSS does not receive any identifiable data; investigators will be asked to adopt systems that minimise the need for identifiers. CAPSS and all surveillance investigators or their institutions are registered under the Data Protection Act. Individual studies will require ethics approval, and where data is collected without consent approval under Section 251 from the NIGB Ethics and Confidentiality Committee would also be required.

Investigators are encouraged to submit their study findings for publication and/or to present them at RCPsych's and/or Faculty Scientific Meetings.


Funding: CAPSS is funded by start-up funding from the CAP Faculty and also through contributions from the investigators who wish to use the system.   



Ethics and Confidentiality


The General Medical Council principles of Good Medical Practice, in particular state that, all doctors should take prompt action to prevent the compromising of patient safety, dignity or comfort, are observed in research using The Child and Adolescent Surveillance System.

CAPSS and the research teams involved in studies are unreservedly committed to preserving medical confidentiality in all aspects of their work.

CAPSS requires study applicants to demonstrate their compliance with each of the eight principles outlined in the Data Protection Act 1998.


The current research status of studies run on CAPSS within the NHS can be found using the HRA’s online decision tool.


This tool can be accessed here, whereby researchers wanting to run a study on CAPSS can confirm the status of their prospective research.  


What approval is required?

The following procedures and principles must be observed by all studies run on CAPSS:


  • All studies have HRA ethical approval for confidentiality Section 251 approval under the NHS Act 2006 before commencement (which is fast-tracked as per the prior agreement with the Confidentiality Advice Group within HRA, which still stands).
  • As is it likely the work of a researcher using CAPSS would be conceptualised by universities as research, investigators should check whether they require local university research ethical approval. We anticipate that in most cases, they would.
  • Study applicants to demonstrate their compliance with the principles outlined in the Caldicott Report (1997).
  • Study applicants to detail the security measures in place to protect patient confidentiality.


What approval is not required?

As studies run on CAPSS do come under the NHS conceptualisation of research, the following approval procedures are NOT needed for using the system:


  • NHS Research Ethics Committee (REC) approval
  • Research & Development (R&D) approval from local trusts

Information and guidance has been developed by the British Paediatric Surveillance Unit  and CAPSS on ethics and confidentiality in epidemiological surveillance.





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