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 and Republic of Ireland are invited to take part in the BPSU eReporting scheme. Each month, we send an eCard by email asking clinicians to confirm whether they have seen any cases of the rare conditions currently under surveillance. If a case is reported, study investigators may follow up with additional questions. Please look out for your eCard at the beginning of each 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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