Progress made possible by you

Registry services

Unlike many other registries, at INPDR we support any high-quality research that benefits the Niemann-Pick community.

Our expert team at INPDR can undertake research and analysis on your behalf. Or we provide controlled access to datasets to allow you to do your own analysis.

  • INPDR services are free for clinicians participating in the INPDR and patient support organisations (provided commercial organisations are not funding or collaborating in the research).
  • Commercial organisations can access INPDR services through a simple subscription. Please get in touch at to find out more.
  • Academic and statutory organisations can request our services for approved research with a single-use fee.

Accessing INPDR services

If the aim of your research is to help the Niemann-Pick community, our aim is to help you in every way we can.

  • The first step is to complete a data access request form.
  • Please make sure you have read our data access process and provide as much information as possible, including study time frames.
  • Your completed form will be assessed by our management team followed by our Scientific Advisory Committee. We’ll then contact you with the outcome of your request.
  • If you want to use data from the registry for creating a publication (such as an article or a poster), read our INPDR Publication Policy then get in touch to request a publication project form.