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
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Dr Dasha Nicholls - Chair of CAPSS Executive Committee,
Consultant Child and Adolescent psychiatrist and Honorary Senior
Lecturer Joint Head of the Feeding and Eating Disorders GOSH
Cornelius Ani - Consultant Child and Adolescent Psychiatrist and
Honorary Senior Lecturer - Imperial College London
Tamsin Ford - Honorary Consultant Child and Adolescent
Psychiatrist and Clinical Senior Lecturer, Peninsular Medical
School
Elena Garralda - Professor of Child and Adolescent Psychiatry,
Imperial College London
Tony James - Consultant Child and Adolescent
Psychiatrist, Warneford Hospital, Oxford
Richard Lynn - British Paediatric Surveillance Unit of the Royal
College of Paediatrics and Child Health, Hon Research Fellow, UCL
Institute of Child Health, London
Geraldine Mason - FACTOR representative
Fiona McNicholas - Consultant Child & Adolescent
Psychiatrist, Our Lady’s Hospital for Sick Children, Ireland
Michael Morton - Dr Michael Morton, Consultant Child
Psychiatrist, Yorkhill Children's Hospital
Alan Quirk - Senior Research Fellow, the Royal
College of Psychiatrists' Research Unit. CAPSS operations
manager
Richard Reading - Consultant Paediatric Community
Paediatrician
Adi Sharma - Hon Clinical Lecturer in Child and Adolescent
Psychiatry, Newcastle Royal Infirmary
Brent Taylor - Professor in Child Health Great Ormond Street
Hospital - Institute of Child Health
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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
Dasha Nicholls 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 "nil return" 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
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 CAPSS also requires:
* 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
* that all studies have
ethics approval for national surveillance and Section 251
approval under the NHS Act 2006 before commencement
Information and guidance has been developed by
the British Paediatric Surveillance Unit on ethics and
confidentiality in epidemiological surveillance which CAPSS are
adhering to.