Research Platform

The British Paediatric Surveillance Unit (BPSU) has developed an effective mechanism for surveillance of uncommon disorders of childhood. UKOSS uses similar methodology to identify cases of uncommon obstetric disorders. Descriptive, case-control and anonymised cohort studies are conducted through a prospective, monthly case-collection scheme. Each month, nominated individuals (usually a midwife, an obstetrician, an obstetric anaesthetist or a perinatal risk coordinator) in each hospital with a consultant obstetric unit are sent a report request email contianing a unique link. Upon clicking the link reporters are taken to a reporting page (figure) with a list of conditions currently under surveillance. They are asked to complete a list of text boxes indicating if any cases have occurred in the previous month, or if none, to submit the report with all zeros.

On receiving a case report, the UKOSS team dispatches a simple data collection form to collect more detailed information about the case. The data collection forms are developed individually for each condition (see appropriate web page). The data collection form seeks confirmation of the appropriate case definition and additional information on risk factors, management and outcomes according to the protocol relating to each condition. UKOSS collects anonymised information only. Some studies also collect anonymised information on control women. In these studies, reporting clinicians are also asked to complete a similar data collection form for appropriate control women. The UKOSS methodology has been approved by the London Multi-centre Research Ethics Committee (MREC) (MREC reference 04/MRE02/45).