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The British Paediatric Surveillance Unit: a global model for rare disease research in children
- Dr Peter DavisChair of the British Paediatric Surveillance Unit (BPSU)
Key points
- The unit was established in 1986 to study rare diseases, their incidence and prevalence, and outcomes for affected children.
- Its success led other countries to set up their own surveillance units, with Germany first in 1992, followed by Australia, New Zealand and Canada.
- These units continue to produce large numbers of studies and publications that improve understanding of rare diseases in children around the world.
Dr Peter Davis, Chair of the British Paediatric Surveillance Unit (BPSU), discusses the pioneering role of the BPSU in advancing the understanding of rare diseases in children. Established in 1986, the BPSU was created to study rare diseases, determine their incidence and prevalence, and assess outcomes for affected children. Over more than three decades, the BPSU has become a model for similar surveillance units worldwide, with Germany following in 1992, and Australia, New Zealand, and Canada subsequently establishing their own units. These international collaborations have generated a wealth of studies and publications, significantly enhancing global knowledge about rare diseases in children. Dr Davis highlights the BPSU’s ongoing commitment to supporting research, sharing best practices, and fostering international partnerships to improve outcomes for children with rare diseases. This interview took place at the RCPCH conference 2025 in Glasgow, Scotland.
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Automatic transcript, lightly edited for readability. It may contain errors, so check it against the video before quoting.
So the British Paediatric Surveillance Unit was established in 1986 to study rare diseases, to understand their incidence, prevalence, and also potentially find out about the outcomes for these children who are affected with these rare diseases. It's been such a success over the last 30 or so years that other surveillance units have set up elsewhere around the world. The first to follow us was Germany in 1992. Subsequent to that, we've had units set up in Australia, New Zealand, Canada, and they continue to produce large numbers of studies and publications about rare disease, which is great for our understanding of what's happening for children with rare diseases around the world.
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Dr Peter Davis. “The British Paediatric Surveillance Unit: a global model for rare disease research in children.” The Paediatric Video Journal, 23 June 2025. https://paediatricvj.com/videos/the-british-paediatric-surveillance-unit-a-global-model-for-davis/
This interview is educational content intended for healthcare professionals and is not medical advice. Views expressed are those of the speaker. © The Paediatric Video Journal. All rights reserved.