Progress made possible by you


Signing up

The INPDR is made up of two separate but interlinked databases:

  • Patient Reported Database (PRD)
  • Clinician Reported Database (CRD)

As a clinician supporting a patient affected by Niemann-Pick diseases, your input to the CRD is essential. With your support, we can make sure the INPDR is a ground-breaking global resource improving the lives of the Niemann-Pick community.

How to sign up as a clinician to the Clinician Reported Database (CRD)

  1. Get in touch
    Email to discuss joining the INPDR. Your support will be appreciated!
  2. Getting started
    We will get in touch and start the onboarding process, including providing key study documents such as the study protocol, information sheets and informed consent forms.
  3. Site set-up
    Once all local, ethical and hospital approvals have been obtained, we’ll give you a username and password to access the Clinician Reported Database (CRD) system. You can then speak to your patient about receiving Informed Consent from them.
  4. Consent
    When we receive the Informed Consent from your patient or their family, we’ll allocate a unique identifier for your patient.
  5. Data entry
    You or a designated member of the patient’s clinical team can log in and enter new patient data on their first visit and then on each follow-up visit.
  6. Data review
    Our Clinical Research Associate will review the data and can provide you with support on an ongoing basis.