How does CAPSS work?
CAPSS uses the active surveillance methodology developed by the BPSU.
An electronic reporting card ('Yellow 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.
Overview of the application process
What disorders and events are surveilled?
We’re interested in rare childhood disorders or events (or a rare complication of a more common condition) which are so unusual that we need to collate cases 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
- is the methodology feasible and acceptable?
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
Ethics and confidentiality
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 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?
The following procedures and principles must be observed by all studies run on CAPSS:
- 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).
- As it’s likely the work of a researcher using CAPSS would be conceptualised by universities as research, investigators should check whether they need local university research ethical approval. We anticipate that in most cases, they will.
- Study applicants to demonstrate they’re complying 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.
If you’re interested in applying for a CAPSS study, please email CAPSS@rcpsych.ac.uk.