International
Niemann-Pick Disease
Registry
We collect patient and clinical data on Niemann-Pick diseases to help advance research and improve outcomes for those affected.
Real-world data provides a clearer, more comprehensive picture of these conditions — including how they present, how they progress, and how they impact individuals over time. This information supports ongoing research, enhances clinical understanding, and contributes to the evaluation of existing and emerging approaches to treatment.
Registry Services
Learn how the registry generates robust, real-world data to inform decision-making, support evidence generation, and strengthen the understanding of Niemann-Pick diseases at a system level.
Request to Use Registry Data
Request to Use Registry Data > Find out how to request access to registry data to support your research, andcontribute to advancing understanding of Niemann-Pick diseases.
Patient organisations
Find out how you can contribute to the registry, collaborate with a global network, and helpstrengthen knowledge and progress in Niemann-Pick diseases.
Patients and families
Find out all you need to know about joining the registry, including how easy it is.
Clinicians
Discover how you can join other clinicians from around the world to make a difference.
Sign up
Signing up is quick and simple and you receive full support from our team. Find out more, or start your sign up now.