Progress made possible by you

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.

Mother and daughter sat in a colourful room

How to sign up as a participant to the Patient Reported Database (PRD)

  1. Set up your user account
    Set up your user account online by going to the log in/sign up page.
  2. Consent
    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).
  3. Verification
    Your diagnosis status will be verified by our registry team, so we can make sure we’re using your data correctly.
  4. Questionnaire
    You’re ready to go: complete your first questionnaire online — helping us by sharing your experiences of living with NPD.
  5. 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.