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

 

About CAPSS

Child and Adolescent Psychiatry Surveillance System (CAPSS)

 

CAPPS 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.

 

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 Clinical Senior Lecturer, Peninsular Medical School

 

Dasha Nicholls - Consultant Child & Adolescent Psychiatrist and Honorary Senior Lecturer Joint Head of the Feeding and Eating Disorders GOSH


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

 

Marinos Kyriakopoulos – Consultant Child and Adolescent Psychiatrist

 

Richard Lynn - British Paediatric Surveillance Unit of the Royal College of Paediatrics and Child Health, Hon Research Fellow, UCL Institute of Child Health, London

 

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

 

Michael Morton - Consultant Child Psychiatrist, Yorkhill Children's Hospital

 

Alan Quirk - Senior Research Fellow & CAPSS operations manager, Royal College of Psychiatrists' Centre for Quality Improvement

 

Paul Tiffin - Clinical Senior Lecturer and Honorary Consultant in the Psychiatry of

Adolescence, School for Health, the Wolfson Research Institute, Durham University

 

Richard Reading - Consultant Paediatric Community Paediatrician

 

Adi Sharma - Hon Clinical Lecturer in Child and Adolescent Psychiatry, Newcastle Royal Infirmary

 

Hani Ayyash – Consultant General Paediatrician, Doncaster & Bassetlaw NHS Teaching Foundation Trust, Doncaster Royal Infirmary

 

Nadia Micali – NIHR Clinician Scientist, Senior Lecturer and Honorary Consultant Psychiatrist Eating disorders and Adolescent Mental Health research team Behavioural and Brain Sciences Unit, UCL Institute of Child Health

 

Sophie Khadr - Clinical Training Fellow, Gen. & Adolescent Paediatrics, UCL Institute of Child Health

 

Farhana Ali – Executive officer, Rare Disease UK

 

  

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 Operations Manager. 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.

CAPPS 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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