The INPDR is in the process of developing the Patient Reported Database (PRD) part of the Registry, which means exciting changes but also that the current system will be temporarily unavailable to patients already registered.
The new PRD will be more user-friendly so patients and their families can access and navigate the system easily, as well as keep their information up to date. There will also be better functionality, which will make the patient reported data more valuable, relevant and accessible (subject to strict Data Access Guidelines and approval by the Scientific Advisory Committee) to the Niemann-Pick Disease community.
The PRD is expected to be back up and running for existing patients and the families by early November 2019 so watch the website and social media for further updates.
Patients are at the heart of the INPDR and have been since the Registry was created, which is why the INPDR wants to make sure they have the best experience possible when they come to share their data and experiences of living with Niemann-Pick Diseases.
In the meantime, patients and their families who aren’t already signed up to the INPDR can still register their interest so an account can be set up as soon as the new system goes live.
Thank you to patients and their families for their patience and support while we work to harness the potential of the INPDR to make progress for the Niemann-Pick Disease community.
The International Niemann-Pick Disease Registry (INPDR) is seeking a Registry Manager to support further progress of this valuable initiative. If you possess a robust knowledge of healthcare data and its practical applications, have excellent communication skills, an understanding of Information Governance principles, and a passion regarding patient care please apply here.
The INPDR is a single disease-specific registry created by a collaboration of patient groups, health and research professionals with the aim of improving standards of diagnosis, care, and treatment for patients affected by Niemann-Pick diseases on a global basis.