Priority 15 from the Rare Musculoskeletal Diseases in Adulthood PSP

UNCERTAINTY: Are people with rare metabolic bone disorders at risk of any other health conditions? (JLA PSP Priority 15)
Overall ranking	15
JLA question ID	0076/15
Explanatory note	Not available for this PSP
Evidence	A small study suggested that early onset of hypertension was a complication of XLH, particularly if secondary hyperparathyroidism was present (Nakamura Y el al, Endocr J 2017; 64: 283-289).
Health Research Classification System category	Musculoskeletal

Extra information provided by this PSP
Original uncertainty examples	What other illnesses might i encounter later in life due to xlh? are they preventable? ~ I know that there's a link between Ehlers-Danlos Syndrome and endometriosis. I also know that EDS is a mutation of the col1a1 gene like OI. So is endometriosis connected to OI too? I know that around 10% of women have endo; is that rate of prevalence the same or higher (or even lower) in women with OI? ~ Relation between arthritis and XLH
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.

Extra information provided by this PSP

Original uncertainty examples

What other illnesses might i encounter later in life due to xlh? are they preventable? ~ I know that there's a link between Ehlers-Danlos Syndrome and endometriosis. I also know that EDS is a mutation of the col1a1 gene like OI. So is endometriosis connected to OI too? I know that around 10% of women have endo; is that rate of prevalence the same or higher (or even lower) in women with OI? ~ Relation between arthritis and XLH

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