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Policy Research Programme - PRP (35-01-14) Research to support evidence building and the evaluation of the UK Rare Diseases Framework 2021- 2026


10 January 2023


13:00 on 14 February 2023


  • For help with your application contact
  • For more information about the funding Programme, visit the PRP Page
  • Got a research idea and not sure how to turn it into a funding application? The Research Design Service (RDS) supports health and social care researchers across England on all aspects of developing and writing a funding application. Find out how the RDS can help with your application.

Supporting Information

*This document is an example of the online Standard Application Form and can be used as a template to prepare your answers. Please do not use this as an application form. You must apply using the online form in the Research Management System.

We invite applications for research to evaluate and add to evidence on the United Kingdom (UK) Rare Diseases Framework 2021 – 2026. This is a significant opportunity to inform government policy and build vital evidence for patients and those around them.

We intend to commission research in three related strands:

Strand 1: Designing high level metrics for a portfolio level evaluation of England’s Rare Diseases Action plans
Strand 2: Measuring time to diagnosis for people with rare diseases
Strand 3: Improving the coordination of care for people living with rare diseases – building the evidence base
At this first outline application stage you may bid for one, two or three of these strands. These strands are being commissioned together to minimise burdens on the rare diseases community, maximise synergies between projects, and to ensure good value for money. The expert panel which will advise on commissioning this research will be attentive to these factors, including in feedback to help shape stage two full proposals. This feedback could potentially involve asking bidders at outline stage to collaborate on stage two proposals.
These strands of research should contribute evidence to determine whether the England’s Rare Diseases Action Plans have helped improve the lives of people living with rare diseases.

For more information, please consult the Research Specification for this call (linked on the left hand side).

The submission deadline for applications is 1pm on 14 February 2023.