Health Global Rare Disease-specific Natural History Registry Sets Ambitious Targets

Global Rare Disease-specific Natural History Registry Sets Ambitious Targets

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The INPDR releases its ambitious Strategic Business Plan 2020 – 2022 setting targets to continue leading edge work and provide impetus for the future.

The INPDR, a ground-breaking patient-focussed rare disease-specific registry, has announced plans to build on progress so far and continue to drive positive change for the international Niemann-Pick disease community.

Originally established in 2013, through the shared vision of patients, health and research professionals, the INDPR collects Clinician Reported and Patient Reported data to facilitate improvements in care and treatment for the global Niemann-Pick community.

Collaborative working is the cornerstone of progress, enabling the INPDR to achieve key milestones and engender support for its innovative work. Although the rare disease environment has changed since 2013, the INPDR continues to recognise and respond to the unmet needs with this community, through its support for research and therapeutic development.

Jim Green, Chair of the Board of Trustees, said:

“The INPDR has advanced significantly over the years and being a patient-focussed organisation has been key to that.

“With the publication of our Strategic Business Plan 2020 – 2022, we want to secure the future of the INPDR for the benefit of patients, their families and the wider Niemann-Pick disease community.

“We are proud to collaborate with global experts in NPD.

“Through our Strategic Business Plan we will continue to grow our network by encouraging patients and clinicians to participate in the INPDR and to contribute to life changing research.”

Key targets for the INPDR focus on:

  • recruitment through the Global Development Plan,
  • research through data quality and access, and,
  • strengthening governance and sustainability.

Conan Donnelly, Registry Manager, added:

“The INPDR is built on the strong foundations of the international NPD patient community.

“With a robust governance structure, the support of clinicians and an experienced management team, the INPDR is ideally placed to realise its potential as a resource to facilitate research and ultimately improve patient outcomes.”

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