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What is the INPDR?

Supporting research

We support clinical and epidemiological research by providing controlled access to anonymised data. It’s one of our key activities at INPDR.

We have two priorities when it comes to supporting research: ensuring the privacy of patient data, and ensuring data is used to advance the research and understanding of Niemann-Pick diseases.

Access to data is overseen by our Board of Trustees and Scientific Advisory Committee. This makes sure sensitive patient data is protected, while enabling its use in research

To understand the types of data we collect, why we collect it and how we use it, see our privacy policy.

You can view our data access process here and submit a request here.

Clinical investigators in the INPDR

Access anonymised datasets and analytical services for approved research studies at no cost.

Advocacy organisations, patient groups and media organisations

Access approved analytical services as part of the core service of the INPDR.

Academic and statutory organisations

Access datasets and analytics for approved research with a single-use charge applied on a case-by-case basis.

Looking for funding?

The William French Memorial Award offers grants and bursaries to UK based young scientists and early career researchers working in the field of Niemann-Pick disease type C (NPC), with preference given to supporting their studies, and to research or activities that may lead to the advancement of progress in the study of NPC.

You can learn more here.