What is the INPDR?
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
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.