Clinicians

The International Niemann-Pick Disease Registry (INPDR) is a global initiative that collects and organises patient and clinical data through its Clinical Research Database (CRD). By contributing data from your clinical practice, you help build a robust, real-world evidence base that reflects how Niemann-Pick diseases present, progress, and are managed in different settings.​

This shared resource enables a more complete understanding of these ultra-rare conditions. It supports earlier and more accurate diagnosis, informs clinical decision-making, and strengthens the evidence needed to advance research and evaluate current and emerging treatments.​

Many clinical sites from around the world already contribute to the registry, creating a truly international dataset. Your involvement helps strengthen this collective effort and ensures that future care is guided by high-quality, representative evidence.