The International Niemann-Pick Disease Registry (INPDR) serves as a crucial platform for driving research, supporting better clinical care, and connecting the global Niemann-Pick community. Through the collection and study of worldwide data, the INPDR helps to deepen our knowledge of Acid Sphingomyelinase Deficiency (ASMD Types A & B) and Niemann-Pick Type C (NPC). Unlike traditional rare disease registries, the INPDR brings together patient information in one international resource, offering unique insights into these conditions.
Now operating as an independently governed global registry, the INPDR captures and manages essential data on both ASMD and NPC, helping researchers, clinicians, and families work towards improved understanding, treatment, and care.
The International Niemann-Pick Disease Registry (INPDR) exists to create and maintain a unique, patient-led global database that drives research, supports the development of therapies, and enhances care for people living with Niemann-Pick diseases (ASMD and NPC). By fostering worldwide collaboration, the registry provides a powerful tool to accelerate understanding and improve outcomes for patients.
The data collected within the INPDR contributes to: