CAPSS uses the active surveillance methodology developed by the BPSU:
- An electronic reporting card with a list of conditions is sent each month to consultant child and adolescent psychiatrists and other specialists.
- Clinicians return the card notifying CAPSS of any cases seen or "nothing to report".
- Clinicians are asked to keep a record of patients reported.
- Reporting clinicians are contacted by study investigators with a short follow-up questionnaire.
CAPSS welcomes ideas for surveillance projects. Anyone considering a project that meets the criteria set out below may contact the CAPSS office for advice. A member of the CAPSS Committee may be able to help in the development of an idea for a project.
If you’re interested in applying for a CAPSS study, please email CAPSS@rcpsych.ac.uk.
We’re interested in rare childhood disorders or events (or a rare complication of a more common condition) which are so unusual that cases need to be collated on a national scale to generate sufficient numbers for study.
The CAPSS Executive Committee may also consider inclusion of short-term or geographically limited studies of comparatively more common conditions.
When considering if a study is suitable, we bear in mind:
- The public health and scientific importance of the study
- The acceptability and feasibility of the methodology
Studies will not usually be considered if they are:
- Expecting more than 300 new cases a year
- Clinical trials
- Case control studies
- Developing a registry
- Requires long-term follow up
- Requires retrospective reporting
The CAPSS has a two-phase application procedure.
Phase 1 is a short initial application submitted to the CAPSS Executive Committee to understand the condition you wish to undertake. Applications may be rejected at this stage particularly if they do not fit the eligibility criteria.
At the CAPSS executive meeting a member of the committee will be allocated as “Medical Adviser’ to the potential study. They will follow the application through to completion and may be able to offer additional clarification on ways to improve the study design.
Please read the applications guidelines before completion. The application forms must be submitted 1 month before the CAPSS Executive meeting, which takes place five to six times per year. Please bear in mind:
- You may need to attend the Executive meeting to present your application.
- If approved a more detailed Phase 2 application will be sought, see Phase 2 Applications/Guidelines (below).
- Approval of the Phase 1 does not mean that the Phase 2 application will be automatically accepted.
Phase 2 is a more detailed application in which you submit a research questionnaire, details on costings and administrative support available. Studies may be rejected at this stage, primarily due to the likely difficulties in answering research objectives or problems with a case definition.
For examples of previous questionnaires and protocol cards, please see our studies.
Applicants are encouraged to approach relevant support or public involvement groups to inform them of the proposed study and, where possible, involve them in it.
The cost of running a study with CAPSS is £15,000. The cost of running a study jointly between CAPSS and the BPSU is at a reduced rate of £12,500.
If you’re interested in applying for a CAPSS study and would like more information, please email CAPSS@rcpsych.ac.uk.
The General Medical Council principles of Good Medical Practice say doctors should take prompt action to prevent the compromising of patient safety, dignity or comfort.
These principles are observed in research using The Child and Adolescent Psychiatry 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 show they comply with each of the eight principles outlined in the Data Protection Act 1998.
The research status of studies run on CAPSS within the NHS can be found using the HRA’s online decision tool. Researchers wanting to run a study on CAPSS can confirm the status of their prospective research using the tool.
What approval is required?
- All studies need HRA ethical approval for confidentiality Section 251 approval under the NHS Act 2006 before they start (fast-tracked as per the earlier agreement with the Confidentiality Advice Group within HRA, which still stands)
- All studies collecting data in Scotland require additional approval from the Public Benefit and Privacy Panel
- Investigators should check whether they need local university research ethical approval. We anticipate that in most cases, they will
- Study applicants must demonstrate they comply with the principles outlined in the Caldicott Report (1997)
- Study applicants must detail the security measures in place to protect patient confidentiality
Information and guidance has been developed by the British Paediatric Surveillance Unit (BPSU) and CAPSS on ethics and confidentiality in epidemiological surveillance.