International Niemann Pick Disease Registry

International Niemann Pick Disease Registry

Suite 2 Vermont House,
NE37 2SQ
United Kingdom

The International Niemann-Pick Disease Registry (INPDR) is a not-for-profit charitable company based in the UK, with an independent Board of Trustees and Scientific Advisory Committee. This single disease-specific registry was created by a collaboration of patient groups, health and research professionals with the aim of improving standards of diagnosis, care, and treatment for patients affected by Niemann-Pick diseases on a global basis.

The aims and objectives of the INPDR are:

  • To establish the natural history of ASMD Niemann-Pick disease and Niemann-Pick type C 
  • To establish genotype-phenotype correlations
  • To assess standards of diagnosis, clinical management and quality of care
  • To support recruitment to interventional studies
  • To encourage education of health professionals
  • To empower patients
  • Support regulatory interaction between national/supranational medicines agencies and pharmaceutical companies
  • Speed up progress and understanding of NPD

No content yet

This organisation doesn't have any publicly available jobs, services, news or events.

More Information

Type of Organisation



  • Conan Donnelly