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The process

The direction of research is often set by researchers or by the drug industry. We want to enable patients, carers, family members, and the health and social care professionals who look after those with rare bone conditions to have their say, so that future research is aligned with what matters to everyone whose life is affected.

The JLA process brings patients, carers, family members and health and social care professionals together on an equal footing in a Priority Setting Partnership to:

  • identify unanswered questions about a health problem which is important to them
  • work as partners to prioritise the questions
  • produce a 'Top 10' list of jointly agreed priorities as research questions to be presented to researchers and funders.

Our Project Protocol document sets out the aims, objectives and commitments of the Musculoskeletal Rare Diseases in Adulthood PSP. It sets out how the project meets the principles established by the JLA. Our JLA advisor has played a central role in helping the Steering Group establish this protocol and works to ensure that accountability and transparency are maintained throughout the project.