Meeting report from the 3rd ISCBH-ERN BOND Achondroplasia Workshop on Long Bone Pathology in Children with Achondroplasia, Salzburg, Austria 22nd June 2024

A pre-meeting workshop on Long Bone Pathology in Children with Achondroplasia was held in Salzburg, Austria at the 11th International Conference on Children's Bone Health (ICCBH) 22–25 June 2024. There remains poor understanding and awareness amongst physicians managing achondroplasia of the un...

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Bibliographic Details
Published in:Bone (New York, N.Y.) N.Y.), 2025-01, Vol.190, p.117268, Article 117268
Main Authors: Cheung, Moira S., Alves, Inês, Carl-Innig, Patricia, Eastwood, Deborah, Maghnie, Mohamad, Offiah, Amaka, Paley, Dror, Riganti, Simone, Savarirayan, Ravi, Sessa, Marco, Vogt, Bjoern, Mohnike, Klaus
Format: Article
Language:English
Subjects:
Achondroplasia
Achondroplasia - pathology
Austria - epidemiology
Bone and Bones - pathology
Child
Humans
Intramedullary nails
Limb lengthening
Patient views
Surgery
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Summary:A pre-meeting workshop on Long Bone Pathology in Children with Achondroplasia was held in Salzburg, Austria at the 11th International Conference on Children's Bone Health (ICCBH) 22–25 June 2024. There remains poor understanding and awareness amongst physicians managing achondroplasia of the underlying pathophysiology, radiology, natural history and orthopaedic procedures available for long bone deformities and restrictions. The structure of the workshop consisted of presentation of the results of a multinational patient survey on views of leg lengthening in achondroplasia, lectures, a debate and an interactive round table discussion. In total 150 attendees from 71 different cities and 31 countries were in attendance. •Long-limb surgery in achondroplasia is contentious with wide global variations in practices, outcomes and patient opinions.•Patients expressed concerns about timing and complications of surgery alongside benefits e.g. driving access and selfcare.•A balanced focus on corrective deformity correction verses limb lengthening is important when professionals speak to families.•Risks and benefits of orthopaedic options in achondroplasia are ideally discussed with families prior to an acute situation.•Less invasive: precision drug therapy; guided growth and telescopic intramedullary nails are becoming more available.
ISSN:8756-3282
1873-2763
1873-2763
DOI:10.1016/j.bone.2024.117268