What is the INPDR?
Supporting research
Supporting high-quality research is central to the work of the International Niemann-Pick Disease Registry (INPDR).
We enable research by providing controlled access to anonymised, curated data collected through the registry. This real-world data supports clinical and epidemiological studies, helping to build a deeper understanding of Niemann-Pick diseases and inform improvements in care and treatment.
Our approach
In supporting research, we are guided by two core principles:
- Protecting patient data and privacy
- Ensuring data is used to deliver meaningful benefit for the Niemann-Pick community
All data shared through the INPDR is anonymised and carefully managed. Access is governed through a robust review process, overseen by the Board of Trustees and the Scientific Advisory Committee. This ensures that all research is scientifically sound, ethically appropriate, and aligned with the interests of the community.
Accessing INPDR data
Researchers can request access to INPDR data to support research. Depending on the needs of the request, this may include access to datasets and/or analytical support from the INPDR team.
To get started:
- Review our data access process
- Submit a data access request
- Provide clear details of your research aims and timelines
Further information on the types of data collected, how it is used, and how it is protected can be found in our privacy policy.
Who we support
We aim to support a wide range of research and insight generation across the Niemann-Pick community:
Clinicians contributing to the INPDR
Can access anonymised datasets and analytical support for approved research studies.
Advocacy and patient organisations
Can access analytical support to help generate insights that benefit the community.
Academic and statutory organisations
Can request access to datasets and analysis for approved studies, with access arrangements agreed on a case-by-case basis.
Commercial organisations
Can work with INPDR through structured access arrangements to support research aligned with the registry’s objectives.
Supporting future research
We also support the wider research landscape through initiatives such as the William French Memorial Award, which provides grants and bursaries to UK-based early career researchers working in Niemann-Pick disease type C (NPC).
This helps encourage new research, build expertise, and support the next generation of scientists contributing to progress in the field.
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.