BPSU: Surveillance of rare childhood disease
Welcome to our new website! As partnership organisation, we are a leading centre for rare paediatric disease surveillance in the UK and Republic of Ireland. We have enabled researchers to study over 130 conditions and publish more than 300 peer-reviewed papers.
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How to report cases
Paediatricians across the UK or Republic of Ireland participate in BPSU eReporting. Each month the BPSU emails an eCard for clinicians to report whether they have seen any cases of the rare diseases we are currently studying. As needed, the study investigators will follow up with further questions. Please look out for an email in your inbox at the start of every month.
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How to run a study
We welcome applications from clinicians and researchers to carry out surveillance on rare childhood diseases. We explain eligibility and funding, patient and public involvement and the application process. We also run an annual bursary for trainees to run a study.
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Our impact
Since 1985 we have facilitated research on over 100 rare conditions, influencing decisions on these diseases and their impact on children. Find out about our impact in health policy, public policy, clinical practice and health management, and research and education.
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