KidsRare: A first‑of‑its‑kind UK health data initiative to transform rare disease research for children
We’re collaborating with Great Ormond Street Hospital (GOSH) to set up KidsRare, a pioneering initiative that helps to safely connect paediatric rare disease health data to speed up diagnosis, improve care and accelerate the development of new treatments for children.
Overview
KidsRare will drive forward securely uniting high‑quality health data from paediatric hospitals across the UK. Rare disease data is often fragmented, making it difficult for researchers to see the full picture. By enabling responsible access to joined‑up data, we aim to unlock insights that could turbocharge research into new diagnostics, therapies and AI‑enabled innovations for the thousands of children diagnosed with a rare disease each year.
About KidsRare
KidsRare is designed to overcome one of the biggest barriers in paediatric rare disease research: disconnected and inaccessible health data. Children’s health data is particularly complex – it differs from adult data and is spread across multiple hospitals and specialist centres. Uniting it safely creates a fuller, more detailed understanding of conditions and care pathways.
Through KidsRare, approved researchers will be able to access anonymised, high‑quality datasets that reflect real‑world paediatric care across the UK. This will allow us to:
- generate robust evidence to support the adoption of new treatments, diagnostics and AI tools
- accelerate innovation by providing researchers with the insights they need, earlier
- strengthen the UK’s research environment by supporting collaboration across paediatric specialist centres
Our involvement
We will contribute our data science and infrastructure expertise to KidsRare, which builds on existing infrastructure developed by GOSH and the Children’s Hospital Alliance (CHA) – following the highest standards of data security. It also forms a core part of our new Health Data Strategy, which includes working with NHS England to unlock nationally-held data that can support the delivery of rare disease trials.
About rare diseases in children
More than 3 million people in the UK live with a rare disease, with approximately 70% of these conditions affecting children. For families, the diagnostic journey can take many years, with uncertainty making it harder to access the right support. Currently, over 90% of rare diseases have no approved treatment, leaving most children and young people with limited options.
Children’s health data is often scattered and disconnected across hospitals. This makes it harder for researchers to identify patterns, develop new therapies, or test emerging innovations at the pace needed. Connecting data safely and ethically has the potential to dramatically shorten diagnostic journeys, open doors to clinical trials and support new breakthroughs more quickly.
