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): The Seven Year
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
Tamsin Ford Chair of CAPSS Executive
Committee, Honorary Consultant Child and Adolescent Psychiatrist
and Clinical Senior Lecturer, Peninsular Medical School
Vice Chair, Hon Clinical Lecturer in Child and
Adolescent Psychiatry, Newcastle Royal Infirmary
Nicholls Consultant Child & Adolescent
Psychiatrist and Honorary Senior Lecturer Joint Head of the Feeding
and Eating Disorders GOSH
Consultant Child & Adolescent Psychiatrist and Honorary Senior
Lecturer - Imperial College London
British Paediatric Surveillance Unit of the Royal College of
Paediatrics and Child Health, Hon Research Fellow, UCL Institute of
Child Health, London
McNicholas Consultant Child & Adolescent
Psychiatrist, Our Lady’s Hospital for Sick Children, Ireland
Morton Consultant Child Psychiatrist, Yorkhill
Senior Research Fellow & CAPSS operations manager, Royal
College of Psychiatrists' Centre for Quality Improvement
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
Kyriakopoulos Consultant Child and Adolescent
Psychiatrist, South London and Maudsley NHS Foundation Trust
Special Lecturer in Child & Adolescent Psychiatry (University
CAMHS Psychiatry Registrar,CAPSS Trainee Representative
ST4 Child and Adolescent psychiatry trainee, Royal London and Great
Ormond Street,CAPSS Trainee Representative
Andrew McWilliams ST1 ACF in Child
and Adolescent Psychiatry, South London and Maudsley NHS Foundation
Trust. CAPSS Trainee Representative
How the unit works
organisations are involved in CAPSS including:
- the College
- the Faculty of Child and Adolescent
- British Paediatric Mental Health
- British Paediatric Surveillance Unit
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.
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
"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
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
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
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
- 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
- Study applicants to detail the
security measures in place to protect patient
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
Information and guidance has been developed by
the British Paediatric Surveillance Unit and CAPSS on ethics
and confidentiality in epidemiological surveillance.