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)
|JLA question ID
|Not available for this PSP
|Health Research Classification System category
|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?
|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 unique ID
|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