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International Niemann-Pick Disease Registry

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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


International Niemann-Pick Disease
Registry Announcement

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INPDR

A project initiated by the
“International Niemann-Pick Disease Alliance”

The INPDA and NNPDF are delighted to announce that the NNPDF will be acting as a co-coordinator for information and support for the roll-out of the International registry for NPD in the United States.

It has taken three years and $3m but the NPD world now has a truly international disease registry. This registry has been created by a consortium of NPD scientists, clinicians and patient organisations from around the World.  This registry is collecting data from clinicians and affected families.

Unlike most disease registries this registry is owned by the INPDA, a worldwide network of NPD patient support and advocacy foundations, and managed by a team of professionals. The objective of the registry is to facilitate progress by building knowledge about both ASMD and NPC. By understanding the natural history of these diseases it will be possible to evaluate therapies, manage and predict disease progression, recruit for trials and tailor treatments. In brief begin to understand more about these diseases.

The registry is now built and it will be launched in as many countries as possible throughout the World this year. The NPD patient support and advocacy groups will be receiving information about the roll out and will be in touch during 2017.

This initiative has the potential to significantly enhance progress and make a real difference to those affected by Niemann-Pick Disease.


05/17/2017  jjb