What is the INPDR?
Mission, vision and principles
To document the Niemann-Pick patient experience to advance research and improve health outcomes.
A comprehensive, international data resource specific to Niemann-Pick diseases. One that increases understanding of these rare conditions, encourages efficient and timely diagnosis, enables progress in research and clinical trials, and facilitates the development of therapeutic interventions.
- We respect and protect patient privacy, and build trust among our patient community.
- We strive for excellence through continuous improvement, professionalism and expert support.
- We operate to the highest levels of scientific integrity and promote high-quality research.
- We are transparent in communications and take responsibility for our actions and decisions.
- We foster an environment of collaboration to improve outcomes in Niemann-Pick diseases.
- We embrace innovation and change as appropriate to our needs.
- We shall remain independent of advocacy, policy and commercial interests and let the data tell the story of Niemann-Pick diseases.