International Niemann Pick Disease Registry

A new concept in disease registries

The International Niemann Pick Disease Registry (INPDR) aims to:

  • Share Information - Collecting anonymised patient data from across the world in a consistent format.
  • Gain Knowledge and Insight - establishing the natural history of NP diseases.
  • Improve Research - coordinating research efforts globally.
  • Enable Rapid Diagnostics - facilitating equitable access to state of the art diagnostic tests.
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Patients & Families

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The registry is owned by the International Niemann-Pick Disease Registry Project, and is managed by an international consortium of professionals and is hosted at the University Hospitals Birmingham NHS Foundation Trust (UHB) in the UK. The project to develop the INPDR arises from the NPDR project which has received funding from the European Union, in the framework of the Health Programme.