What is the INPDR

The INPDR is a collaboration between clinicians, scientists, researchers and patient associations across the world to collect clinical, genetic, diagnostic and outcome data from patients with Niemann-Pick Diseases (NPD).

What is the Aim of the INPDR?

How Does It Work?

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How Do I Join?

Once your clinician has discussed this with you, they will then be able to enrol you, or the person you care for, onto the registry. Using medical information stored by the clinician, they will start adding data to the registry. Your involvement will help us produce a clearer picture of Niemann-Pick Diseases by helping clinicians fill the gaps in their information.

Participating in the registry requires no extra testing or lifestyle changes. With your consent, your clinical team will be in charge of inputting into the registry and maintaining the data. You are not obliged to take part in the registry, and your quality of care will not be at all affected if you do not take part. Participating in the registry is 100% voluntary.

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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.