What is the BPSU?
The BPSU is a unit which enables doctors and researchers to find out how many children in the UK and Republic of Ireland are affected each year by a particular disease or condition – this is called epidemiological surveillance.
Rare diseases and infections are an important cause of morbidity and mortality in childhood. Although individually uncommon, together they number thousands. These conditions pose large financial and emotional burdens for affected children, their families and health systems.
The BPSU system lessens the burden on reporting doctors of receiving requests from numerous different sources for reporting cases of rare disorders.
The BPSU aims to encourage and support:
- surveillance of rare disorders
- increase clinicians and public awareness of rare disorders
- a rapid response to public health emergencies
- improvement in prevention, treatment and service planning for rare disorders
- the BPSU is committed to ensuring that patient and public involvement is embedded in its work
The BPSU enables paediatricians to:
- participate in the nationwide surveillance of infections and infection-related conditions
- promote the study of rare childhood disorders
- provide a mechanism by which 'new' diseases can be detected so that early investigation can take place
Supplementary activities of the Unit include:
- providing advice and assistance to researchers on the design of their studies
- involvement in international surveillance of rare disease
What has the BPSU achieved?
The BPSU has:
- initiated over 80 studies;
- collected information on over 20,000 cases
- published and presented over 300 papers
- held several scientific symposia
- educated doctors and the public through easy access to clinical information via its annual reports, newsletter and website
- encouraged links with parent support groups
- encouraged the development of similar specialty units with in the UK and abroad
BPSU Evaluation
The BPSU undertook an internal evaluation on 2008. A summary of the evaluation findings (PDF, 69KB, 2 pages) can now be downloaded
The full report can also be downloaded (PDF, 500KB, 58 pages)
Associated Publications, Resources and Links
- Clinical Audit and Quality Improvement
Clinical audit projects As part of the College's strategy for clinical audit , we facilitate high ... - Mapping services
We are currently mapping the UK in order to provide a pragmatic network of tertiary and secondary level services. We ... - Stakeholder organisations
The following organisations have registered as project stakeholders or are partners in the National Epilepsy Audit: ... - Epilepsy12 - background and purpose
Epilepsies are the commonest disabling chronic neurological disorders of childhood with a prevalence of approximately ... - Methodology and data collection
Project Methodology The Epilepsy12 national audit comprises three components: service descriptor, clinical audit ...