What is the INPDR?
Mission, vision and principles
Our mission
To document the Niemann-Pick patient experience to advance research and improve health outcomes.
Our vision
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.
Our principles
- We respect and protect patient privacy and build trust amongst our patient community.
- We foster an environment of collaboration to improve outcomes in Niemann-Pick diseases
- We promote national leadership in delivering high-quality research using registry data
- We shall remain independent of advocacy, policy and commercial interests and let the data tell the story of Niemann-Pick diseases.
- We facilitate the running of the registry via local leadership, through fostering collaborations between clinicians and patientadvocates
- We strive for excellence through continuous improvement, professionalism and expert support.
- We are transparent in communications and take responsibility for our actions and decisions.
- We embrace innovation and change as appropriate to our needs.
