About the Registry

The INPDR has the power to increase knowledge and understanding of Niemann-Pick Disease; it is truly a global collaboration between clinicians, scientists and patient associations, working together for the benefit of patients and their families everywhere.

The INPDR is a not-for-profit, registered company based in the UK.

It is owned and managed by the International Niemann-Pick Disease Alliance (INPDA), an umbrella organisation of 16 NPD patient support groups and charities in 15 different countries, with support from professional partners involved in the care of patients affected by all types of Niemann-Pick Disease (ASMD & NP-C).

The purpose of the INPDR is to develop and sustain a unique patient-led database that supports research and therapy development, and improves care and treatment for Niemann-Pick Disease patients through global collaboration. This is done by:

  • Continually using the power of data to improve the broader understanding of Niemann-Pick disease
  • Supporting and facilitating consistent research and therapy development
  • Encouraging earlier diagnosis and equitable access to diagnostic testing
  • Establishing the INPDR as a unifying initiative much-needed by patients and professional alike.

We hope that this pioneering initiative encourages further global collaboration between patient groups, clinicians, scientists, researchers and pharmaceutical companies, all of whom wish to collectively improve care and treatment options for Niemann-Pick disease patients everywhere.

The Future of the INPDR

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

  • The Future of the INPDR