Niemann Pick Diseases (NPD) are rare, progressive conditions with many unanswered questions. More information is needed to better understand how they affect people and progress over time. The International Niemann Pick Disease Registry (INPDR) – a joint initiative between patient organisations and clinicians involved in the care of people with NPD – was established to better understand NPD so that potential treatments can be developed as quickly as possible.
There are two components to the INPDR, together collecting clinical, genetic, diagnostic and outcome data: patient reported data (PRD), completed by the patient or their carer if appropriate; and clinician reported data (CRD), completed by healthcare professionals caring for NPD patients.
We welcome all patients diagnosed with any type of NPD worldwide. Patients can participate in the registry regardless of whether or not they are involved in other clinical studies and trials.
If you are registering more than one person, you may use the same login and password to enter multiple patients. However, a separate survey must be completed for each person. This can be done after registering by clicking "Add a new patient" from your log in page.
Please feel free to share any questions or concerns with us! You can contact the INPDR team at firstname.lastname@example.org
Thank you for taking the time to complete this information and assist in our efforts to improve the lives of those living with Niemann-Pick Diseases.Sign up Log in