The INPDR is your Registry

Data held in the INPDR is owned by patients.

The safety and security of your data within the INPDR is our number one priority, therefore it is only with your direct consent (as a Niemann-Pick disease patient) that we hold your data. Taking part either through your clinician or by directly sharing Patient Reported Data is voluntary so you can withdraw your consent at any time and you do not have to give a reason.

Unlike any other registry or research projects, the INPDR is owned and led by the patient community to ensure the right data is collected and it is shared widely to improve patient outcomes. As a member of the Niemann-Pick community it is your registry.

The data isn’t used for one drug or one research programme, it is available for any study approved by the INPDR Board in the interest of patients with Niemann-Pick disease. This means the data can be used and re-used so more high-quality research can be undertaken.

By participating in the INPDR, and contributing your clinical data and patient perspectives, you will be having a direct impact on the progress in research and future care and support available to Niemann-Pick diseases patients. You can find out more about how your data is used here.