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.

The 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.

There is a robust online consent process and your quality of care will not be affected if you do not take part in either providing Patient Reported Data or Clinician Reported Data.  Taking part in the INPDR is completely voluntary and you can sign up today.