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International Niemann-Pick Disease Registry


International Niemann-Pick Disease Registry

INPDR Project Overview

The International Niemann-Pick Disease Registry project is a collaboration between scientists, clinicians and patient associations and is supported by the EU Directorate General for Health and Consumers (DG-SANCO) via the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA).

The project consists of 11 associate partners and 16 collaborative partners across the globe, covering a vast range of expertise in the field of Niemann-Pick Diseases. Through the International Niemann-Pick Disease Alliance, we work with Niemann-Pick Disease societies across the world to ensure all NPD patients everywhere have the opportunity to participate in this registry.

Currently, multiple registries may exists to capture data for one disease group. This causes a duplication of data between registries, and results in significant time, effort and costs being spent to complete this work. The INPDR aims to create a single registry capturing data for Niemann-Pick Diseases types A, B and C.

As well as capturing data to comprehensively document the natural history of the Niemann-Pick Diseases, the INPDR can facilitate data capture for post-marketing surveillance.

Working with our partners across the world, a global picture of Niemann-Pick Disease will be made clear, leading the way for significant developments in understanding and research.

Follow the links below for additional information.

International Niemann-Pick Disease Registry

INPDR Enrollment Information

Step by Step Enrollment Instructions

10/21/2016 jjb