Rare musculoskeletal diseases in adults: a research priority setting partnership with the James Lind Alliance.

Gerda MickuteKristina StaleyHeather DelaneyOliver GardinerAmy HunterRichard KeenLorraine LockhartNick MeadeMaria NewmanStuart RalstonElaine RushSheela UpadhyayaSandra ReganLaura WattsJennifer WalshPaul WhiteRoger M FrancisM Kassim Javaid

Published in: Orphanet journal of rare diseases (2020)

This James Lind Alliance priority setting partnership is the first to investigate rare bone diseases. The priorities identified here were developed jointly by patients, carers and healthcare professionals. We encourage researchers, funding bodies and other stakeholders to use these priorities in guiding future research for those affected by rare musculoskeletal disorders.

Keyphrases

end stage renal disease
ejection fraction
newly diagnosed
prognostic factors
current status
patient reported outcomes
patient reported