How the unit works
- There are three parent bodies of the Unit (Royal College of Paediatrics & Child Health (RCPCH), Health Protection Agency (HPA) and the Institute of Child Health, London (ICH(L)).
- The BPSU Executive Committee, presently chaired by Professor Allan Colver oversees scientific matters. With the support of the scientific coordinator and medical advisers the committee provides advice and support for those undertaking and wishing to undertake surveillance of rare paediatric disorders.
- A scientific coordinator and research facilitator undertake day-to-day running of the unit. Along with two medical advisers reports are produced for both internal use and for publications (Annual Report and Quarterly Bulletin); provides support to investigators (e.g. questionnaire design and production); and develops the Unit's capabilities including providing advice and assistance to other organisations who wish to develop surveillance units both within the UK and elsewhere.
- The Unit is funded by a grant from the Department of Health until 2012.
Operation of the BPSU
A report card the orange 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 BPSU.
A tear-off slip is provided with the card for the paediatrician to keep a convenient record of patients reported.
"Positive" returns are identified by the Unit's Scientific Coordinator and then notified to the appropriate investigator, who then contacts the reporting clinician directly to request completion of a brief data collection form (Figure 1)
Currently totalling 3000 respondents, the list includes all hospital, university and community consultant paediatrician members of the RCPCH and the Faculty of Paediatrics of the Royal College of Physicians of Ireland. Other respondents include non-College members of some specialty groups and some infectious disease specialists. 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 laboratory reports via the Health Protection Agency (HPA) and Hospital Episode Statistics. (Figure 2).
The Unit does not receive any identifiable data and increasingly the investigators are adopting systems that use coding rather than identifiers. The BPSU and all surveillance investigators or their institutions are registered under the Data Protection Act.
Reports on the scheme have been published periodically in peer review journals, the HPA Communicable Disease Report and elsewhere. The Unit's Annual Report is circulated to all respondents and to other interested parties. In addition, all respondents receive a Bulletin. Investigators are encouraged to submit their study findings for publication and/or to present them at the RCPCH Annual Scientific Meeting.