BSPED2025 Oral Communications Endocrine Oral Communications 4 (8 abstracts)
The united kingdom adult northstar network consensus recommendations of transition of osteoporosis care and management of osteoporosis in adults with duchenne muscular dystrophy
S AbdelRahman 1 , S McCarrison 1,2 , DJ Armstrong 3 , T Aspray 4 , JS Bubbear 5 , F Chandler 6 , EM Clark 7 , N Crabtree 8 , EL Duncan 9,10 , NJL Gittoes 11 , MK Javaid 12 , A Johnson 6 , G Langlands 13 , JB Lilleker 14 , R Padidela 15,16 , P Selby 17 , V Saraff 18 , MR Talla 19 , CC Thornton 20 , JS Walsh 21 , T Willis 22 , C Wood 23,24 , R Keen 5 , R Quinlivan 25 & SC Wong 1,2
1Bone, Endocrine & Nutrition Research Group in Glasgow, Human Nutrition, University of Glasgow, Glasgow, United Kingdom; 2Department of Paediatric Endocrinology, Royal Hospital for Children, Glasgow, United Kingdom; 3Western Health and Social Care Trust (NI) and Nutrition Innovation Centre for Food and Health, Ulster University, Londonderry, United Kingdom; 4NIHR Newcastle Biomedical Research Centre, Translational Clinical Research Institute, Newcastle University and Newcastle-upon-Tyne Hospitals NHS Trust, Newcastle upon Tyne, United Kingdom; 5Centre for Metabolic Bone Disease, Royal National Orthopaedic Hospital NHS Trust, London, United Kingdom; 6Duchenne UK, London, United Kingdom; 7Bristol Medical School, University of Bristol, Bristol, United Kingdom; 8Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham, United Kingdom; 9Department of Twin Research and Genetic Epidemiology, School of Life Course & Population Sciences, Faculty of Life Sciences and Medicine, King’s College London, London, United Kingdom; 10Department of Endocrinology, Guy’s and St Thomas’ NHS Foundation Trust, London, United Kingdom; 11Centre for Endocrinology, Diabetes and Metabolism, Queen Elizabeth Hospital, University Hospitals Birmingham & University of Birmingham, Birmingham, United Kingdom; 12Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Science (NDORMS), University of Oxford, Oxford, United Kingdom; 13Institute of Neurological Sciences, NHS Greater Glasgow and Clyde, Glasgow, United Kingdom; 14Manchester Centre for Clinical Neuroscience, Manchester Academic Health Science Centre, Salford Royal Hospital, Northern Care Alliance NHS Foundation Trust, Manchaster, United Kingdom; 15Department of Paediatric Endocrinology, Royal Manchester Children’s Hospital, Manchaster, United Kingdom; 16Faculty of Biology, Medicine & Health, University of Manchester, Manchaster, United Kingdom; 17Department of Diabetes, Endocrinology and Metabolism, Manchester Royal Infirmary, Manchester University NHS FT, Manchaster, United Kingdom; 18Department of Paediatric Endocrinology, Birmingham Women’s and Children’s Hospital, Birmingham, United Kingdom; 19Department of Endocrinology, Queen Elizabeth University Hospital, Glasgow, United Kingdom; 20Department of Rheumatology, University College London Hospital, London, United Kingdom; 21Mellanby Centre for Bone Research, University of Sheffield, Sheffield, United Kingdom; 22Robert Jones and Agnes Hunt Orthopaedic Hospital, NHS Foundation Trust, Oswestry, United Kingdom; 23Newcastle University Translational and Clinical Research Institute, Newcastle upon Tyne, United Kingdom; 24Paediatric Endocrinology department at Great North Children’s Hospital, Newcastle upon Tyne, United Kingdom; 25Centre for Neuromuscular Diseases, National Hospital, UCL Queen Square Institute of Neurology, London, United Kingdom
Background and objectives: Osteoporosis is a well-recognised complication in Duchenne muscular dystrophy (DMD). While international clinical guidance exist for paediatric management, there is currently no guidance for osteoporosis care during transition to adulthood and for long-term management of therapies initiated in childhood.
Methods: In 2023, a UK expert working group was convened to develop national consensus recommendations for managing osteoporosis in adults with DMD within the adult NorthStar Network. The group included 13 adult and 5 paediatric bone specialists, 3 adult neuromuscular clinicians (2 with paediatric experience), a clinician-scientist/densitometrist, and 3 patient representatives. Systematic and scoping reviews were conducted on DMD-specific osteoporosis therapies, DXA-based fracture risk prediction in DMD and adult glucocorticoid-induced osteoporosis guidelines. A survey of paediatric clinicians, distributed via patient organisations, explored transition-related bone care. A focus group with adults with DMD captured patient perspectives. Four virtual meetings of the expert panel were held. A core team developed the clinical guidance statements and consensus was reached using a modified Delphi process via online voting.
Results: Thirteen clinical guidance statements were developed following three Delphi voting rounds, with 80% agreement required. Key recommendations include:
• All adults with DMD should undergo fracture risk assessment, including DXA and vertebral fracture (VF) evaluation, where this would influence clinical decision-making.
• VF reassessment and DXA is recommended every two years for those on glucocorticoids and should be individualised in others, including those with spinal instrumentation.
• For individuals on bisphosphonates for >10 years who have completed puberty, treatment discontinuation should be considered at transition based on risk factors (e.g., glucocorticoid use, existing or worsening VF, or recent low-trauma long bone fracture).
• If therapy is discontinued, re-evaluation is advised at two years or earlier if a low-trauma fracture occurs or bone density declines significantly.This expert consensus guidance was endorsed by the clinical committee of BSPED in 2024.
Conclusion: This UK-wide expert consensus provides the first national guidance for managing osteoporosis in adults with DMD. The recommendations address key transitional care gaps and support a structured, risk-based approach to lifelong bone health in this population.
Volume 111
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Endocrine Abstracts
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