Help guide the research: Top 10 priorities for Health Professionals in caring for adults with rare musculoskeletal conditions

01 Jun 2017

Health professionals who see patients with rare skeletal diseases are being invited to take part in a survey to identify important unknowns in the diagnosis, treatment, management and delivery of care for adults with rare musculoskeletal diseases.

The disorders to be addressed are Fibrous Dysplasia/ McCune Albright Syndrome, Osteogenesis Imperfecta and X-Linked Hypophosphataemia.

The James Lind Alliance (JLA) Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership (PSP) are bringing together patients, carers and healthcare professionals, with a view to generating a top 10 list of questions that they want researchers to address. The priority questions will then be promoted to funders of research such as the National Institute of health Research (NICE).

Health professionals are asked to complete an online survey which is anticipated to close at the end of June. Responses will be collated, analysed and checked against existing evidence and from this a long list of questions will identified for prioritisation.

To find out more about this exciting project, click here. For more information about rare types of osteoporosis, visit our Rare types of osteoporosis web page.

To help guide the research, please take the online survey.

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