Joining the Patient Reported Database

If you are a Niemann-Pick Disease patient or the family of someone with Niemann-Pick Disease, joining the INPDR and sharing your data and experiences with the Registry can be achieved in a few simple steps.

Your involvement is vital to the future of research and will help us produce a clearer picture of Niemann-Pick Disease.

Participating in the INPDR does not require any extra testing or lifestyle changes.

Patient Reported Data can be completed in isolation by you or a member of your family or in combination with Clinician Reported Data, which with your consent your clinical team will be in charge of inputting and maintaining.

The quality of life questions that are part of the Patient Reported Data questionnaire capture the wider disease impact and the data you provide will influence progress in care, treatment and research.

To sign up to provide Patient Reported Data, there is a robust online consent process. Your quality of care will not be affected if you do not take part in either providing Patient Reported Data or Clinician Reported Data.

If you are interested in Clinician Reported Data, you can talk to your clinician who can provide relevant information and request your consent.

Taking part in the INPDR is completely voluntary and you can sign up today.

Infographic demonstrating steps in process of signing up to PRD