How to Join

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 and will be crucial in the future of research and helping the INPDR produce a clearer picture of Niemann-Pick diseases.

There are two parts to the INPDR:

• The Patient Reported Database (which you can join here)
• The Clinician Reported Database
o Ask your clinician if your hospital is participating, if so ask your clinician to take part. If not you can request for your clinician to contact the INPDR.

Participating in the registry is voluntary and you can sign up online. It is simple to take part in, it requires no extra testing or lifestyle changes. You are not obliged to take part in the Registry, and your quality of care will not be at all affected if you do not take part.

If you need care or support, you can find out more about Niemann-Pick diseases and patient support through one of the many patient groups we work with. Visit the International Niemann Pick Disease Alliance website where you will find details about a range of patient groups around the world or get in touch with us for more details.

The process of signing up to the Patient Reported Database

Tutorial videos

Below the INPDR has produced some short informative videos guiding you through the process of signing up to the Patient Reported Database and completing subsequent questionnaires.

  • PRD – Introduction

  • PRD – Creating a User Account

  • PRD – Enrolling a patient

  • PRD – Completing questionnaires