If you are a Niemann-Pick patient joining the INPDR can be achieved in just a few easy steps!
Once you are signed up to the INPDR, in collaboration with your clinician, we will be able to store your medical information which will consequently add data to the registry. Your involvement is vital to the future of research and will help us produce a clearer picture of Niemann-Pick Diseases by helping clinicians fill the gaps in their information.
Participating in the INPDR requires no extra testing or lifestyle changes. With your consent, your clinical team will be in charge of inputting into the registry and maintaining the data. You are not obliged to take part in the registry, and your quality of care will not be at all affected if you do not take part. Participating in the registry is 100% voluntary.