Priority 17 from the Rare Musculoskeletal Diseases in Adulthood PSP

UNCERTAINTY: What is the best way to link up and organise all the health professionals who care for a person with a rare metabolic bone disorder? (JLA PSP Priority 17)
Overall ranking 17
JLA question ID 0076/17
Explanatory note Not available for this PSP

None identified

Health Research Classification System category Musculoskeletal
Extra information provided by this PSP
Original uncertainty examples Have we embedded enough thinking within primary care around rare diseases?  How can we embed genomics in mainstream medicine into primary care? ~ Why do conditions like RA, Lupus and other rheumatic conditions have a multidisciplinary approach but OI patients are left without or fumble around to get help? ~ Can gps be told what bloods tests and urine tests to monitor and how often?
Submitted by Individual survey submissions categorised by Health or Social Care Professionals, Organisations representing people with rare musculoskeletal diseases, people with rare musculoskeletal diseases, relatives/carers/friends, Other.  For full details of the type of submitter for each individual question, please see the spreadsheet of data held on the JLA website.
PSP information
PSP unique ID 0076
PSP name Rare Musculoskeletal Diseases in Adulthood
Total number of uncertainties identified by this PSP. 39  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 18 June 2018