Patients and families
The INPDR – your registry
The INPDR is your registry – it collects and records your experience as a patient or a care giver, helping to tell the real story of what it is like to live with Niemann-Pick diseases.
How to sign up as a participant to the Patient Reported Database (PRD)
- Set up your user account
Set up your user account online by going to the log in/sign up page.
You’ll find an information sheet and consent form online, where you can give consent to share your data (which will always be kept completely secure).
Your diagnosis status will be verified by our registry team, so we can make sure we’re using your data correctly.
You’re ready to go: complete your first questionnaire online — helping us by sharing your experiences of living with NPD.
- Follow up every 6 months
Simply return to the registry and update us every six months. Thank you!
Joining the Clinician Reported Database
To make your data work even harder, you can also ask your clinician to enrol you into our Clinician Reported Database (CRD). If your clinician is not yet participating, they can find out how to sign up here.