Priority 24 from the Rare Musculoskeletal Diseases in Adulthood PSP
|UNCERTAINTY: Would specialist services result in better care for people with rare metabolic bone disorders? (JLA PSP Priority 24)
|JLA question ID
|Not available for this PSP
|Health Research Classification System category
|Extra information provided by this PSP
|Original uncertainty examples
|Why have we not designated specialist centres as clear referral routes for patients with these rare diseases? ~ Are there specialist facilities available for older patients with my condition? ~ Adults with OI still need regular check ups and this would be best placed in a centre of excellence, on a whole day to avoid multiple appointments requiring time away from work etc, why is this not done?
|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