Help Requested from Professional Members of the Paget's Association
The James Lind Alliance Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership brings together patients, carers and health care professionals to identify important unknowns in the diagnosis, treatment, management and care delivery for adults with rare musculoskeletal diseases. The disorders to be addressed comprise Fibrous Dysplasia/McCune Albright Syndrome, Osteogenesis Imperfecta and X-Linked Hypophosphataemia. This will ultimately generate a top 10 list of questions that adults with rare musculoskeletal diseases, their carers and healthcare professionals want researchers to address. The top 10 will then be promoted to funders of research such as NIHR.
An online survey was launched on the 23rd March 2017 to gather questions from adults with rare musculoskeletal diseases, their carers and healthcare professionals. The responses will then be analysed and checked against existing evidence. Once a long list of questions has been identified, a process of prioritisation will begin and the top 10 will be identified. I, therefore, hope that professional members of Paget's Association who see patients with these metabolic bone disease will be willing to complete the survey (click here to access the survey ).
Professor Roger Francis,
On behalf of the Steering Group of the JLA PSP on Rare Musculoskeletal Diseases.
Steering Group Members:
• Amy Hunter, Genetic Alliance UK, Joint PSP Lead
• Elaine Rush, Patient Representative, Brittle Bone Society & RUDY
• Heather Delaney, Patient Representative, Fibrous Dysplasia Support Society UK
• Jennifer Walsh, Endocrinologist & Senior Clinical Lecturer, Metabolic Bone Centre, Northern General Hospital
• Kassim Javaid, Consultant Rheumatologist and University Lecturer in Metabolic Bone Disease, Oxford University Hospitals Foundation Trust & University of Oxford
• Laura Watts, Rheumatology Registrar, Oxford Deanery
• Lorraine Lockhart, Patient Representative
• Maria Newman, Patient Representative
• Nick Meade, Genetic Alliance UK, Joint PSP Lead
• Oliver Gardiner, Patient Representative, XLH Network & RUDY
• Paul White, Patient Representative
• Richard Keen, Director, Metabolic Bone Disease Unit, Royal National Orthopaedic Hospital, Stanmore
• Roger Francis, Emeritus Professor, Institute of Cellular Medicine, University of Newcastle upon Tyne. Joint PSP Lead
• Sheela Upadhyaya, JLA Adviser, Chair
• Stuart Ralston, Honorary Consultant Rheumatologist & Professor of Rheumatology, University of Edinburgh.