New Best Practice Recommendations Published for Adults with Severe Osteogenesis Imperfecta
The Brittle Bone Society is proud to announce the publication of a landmark paper, titled “Brittle Bone Society best practice management recommendations for adults with severe Osteogenesis Imperfecta (OI), including type III OI.”
Lead by Chair of the BBS Medical Advisory Board, Prof Muhammad Kassim Javaid and developed by a multidisciplinary working group of clinicians, researchers, and individuals with lived experience of OI, the publication provides the first comprehensive UK-focused guidance for the diagnosis, assessment, management, and monitoring of adults living with severe OI.
Adults with severe OI often face complex health needs that extend beyond bone fragility, including respiratory, cardiovascular, dental, hearing, mental health, and mobility concerns. The guidance recognises the need for coordinated, person-centred care and offers practical recommendations for healthcare professionals, patients, families, and carers.
Members of the BBS community, including those with OI and caregivers, played an active role in shaping the recommendations, ensuring that quality of life, emotional wellbeing, and everyday challenges are reflected alongside clinical considerations.
The document also includes clinician and patient checklists designed to support more consistent care, improve communication during appointments, and help identify gaps in services. We hope the recommendations will contribute to improved standards of care across the NHS, support the development of new services, and guide future research into OI.
We are delighted to see this important work published and would like to thank everyone involved whose expertise and lived experience helped make this guidance possible. The full paper is now available to read online.