For Patients

What is the INPDR?

The International Niemann-Pick Disease Registry (INPDR) is a collaboration between patients, health professionals and medical researchers which is pushing for the improvement of care for those affected by the rare and devastating condition, Niemann-Pick Disease.

The INPDR replaces the need for multiple registries and offers a single, disease specific global registry data resource.

The Registry is a secure database of consenting patients with all types of Niemann-Pick Disease (ASMD & NPC) from across the World. The Registry collects data from patients and their clinicians including demographic information, diagnostic results, treatment and health outcomes data.

We are working globally with patient, health professionals, researchers and the pharmaceutical industry to develop a groundbreaking, sustainable patient disease registry that is at the centre of the NPD community empowering patients and facilitating research.

Through the INPDR, patients across the world are provided with a shared place in which invaluable NPD related data can be stored, helping to provide greater knowledge and understanding of NPD for those caring for patients and working on emerging therapies and potential cures.

To date the INPDR has:

• Been developed collaboratively by patient and professional groups for worldwide use with the initial support of a €3 million EU grant

• Continually used the power of data to improve broader understanding of Niemann-Pick disease

• Supported and facilitated consistent research and therapy development, • Encouraged earlier diagnosis and equitable access to diagnostic testing

• Established the INPDR as a unifying initiative much-needed by patients and professional alike

The Future of the INPDR

The following video (provided courtesy of Niemann-Pick disease support group Niemann-Pick UK) features INPDR Recruitment Specialist Jackie Imrie, explaining a little more about the Registry and our hopes for the future.

  • The Future of the INPDR