The Fibrous Dysplasia Support Society UK (FDSSUK) Annual Conference held in Oxford in 2015, was extended for an extra day to allow medical professionals from across the UK who had experience in Fibrous Dysplasia (FD) and McCune-Albrights Syndrome (MAS) to come together and share knowledge and experience. The master class was also attended by leading pioneers in FD/MAS, Drs Mike Collins, Alison Boyce and Bob Stanton from the National Institute of Health in the USA.

Through this networking event, it was recognised that there was limited research into adults with Rare Musculoskeletal Diseases. Support was established for the Rudy Study to link with the James Lind Alliance to understand the joint top 10 research priorities, that were important to medical professionals, patients and carers.

Dr Kassim Javaid was instrumental in the Priority Setting Partnership launch in 2016, membership of which extended to clinicians, patients and carers from FDSSUK, Brittlebone Society and XLH charity patient groups. Genetic Alliance also actively participated in this working group.

The aim of the study was to identify the unanswered questions relating to the treatment and long term management of Rare Musculoskeletal Diseases in adults.

A handout explaining the methodolgy used, how priorities were identified and further details are provided in the Rare Musculoskeletal Diseases In Adulthood Priority Setting Partnership Document.

Following a number of surveys, face to face and skype calls, the top 10 priorities were finally agreed. Interestingly the clinicians, patients and carers were like minded on the priorities. The final workshop took place in London in June 2018 with the top 10 priorities being published in late 2018. FDSSUK have secured funding support in principle to undertake a scoping exercise into potential future research opportunities for adults with FD/MAS.