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; S McCarrison; DJ Armstrong; T Aspray; JS Bubbear; F Chandler; EM Clark; N Crabtree; EL Duncan; NJL Gittoes; MK Javaid; A Johnson; G Langlands; JB Lilleker; R Padidela; P Selby; V Saraff; MR Talla; CC Thornton; JS Walsh; T Willis; C Wood; R Keen; R Quinlivan; SC Wong

doi:10.1530/endoabs.111.OC10.3

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Endocrine Abstracts (2025) 111 OC10.3 | DOI: 10.1530/endoabs.111.OC10.3

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

Author affiliations

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.