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
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
Marinos Kyriakopoulos – Consultant Child and
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,
Michael Morton - Consultant Child Psychiatrist,
Yorkhill Children's Hospital
Alan Quirk - Senior Research Fellow & CAPSS
operations manager, Royal College of Psychiatrists' Centre for
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
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
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
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
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
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.
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
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.