Medical Professionals
Cavernoma Alliance UK (CAUK) collaborates with its Medical Advisory Board to provide healthcare professionals with the latest resources on cavernoma, including updated clinical guidelines,. These materials are designed to support clinicians in delivering informed, high-quality care to individuals affected by cavernoma.
Clinical Care Guidelines
In May 2025, our sister organisation, Alliance to Cure Cavernous Malformation (formerly Angioma Alliance), published an updated version of the Guidelines for the Diagnosis and Clinical Management of Cavernous Malformations of the Brain and Spinal Cord. This comprehensive document builds on the original 2017 guidelines, incorporating the latest evidence and expert consensus to support healthcare professionals in delivering consistent, high-quality care for individuals with cavernoma.
Key Highlights of the 2025 Update:
Expanded Scope: The updated guidelines include detailed recommendations for spinal cavernous malformations, as well as specific considerations for paediatric and older adult patients.
Diagnostic Criteria: Enhanced guidance on diagnostic imaging, particularly the use of susceptibility-weighted imaging (SWI), and a clearer diagnostic pathway for identifying familial cavernous malformations (FCM).
Genetic Testing and Counselling: Updated advice on genetic testing, including information on founder mutations within specific ethnic groups and best practice for counselling individuals and families.
Surgical Management: Revised indications for surgical intervention, including management of asymptomatic lesions, seizure control, and lesions in eloquent or high-risk locations such as the brainstem and spinal cord.
Medical Management: Current recommendations on the use of anti-seizure medication, pregnancy management, use of common medications (e.g., NSAIDs, antithrombotics), and emerging considerations including vitamin D supplementation and propranolol use.
Quality of Life and Lifestyle: Acknowledgement of the psychological burden of the condition, guidance on promoting mental wellbeing, and advice on physical activity and nutrition.
These guidelines are relevant to a broad range of clinicians, including neurologists, neurosurgeons, radiologists, paediatricians, GPs, geneticists, and obstetricians. They are intended to inform and support best practice across all stages of patient care.
The full text of the guidelines is openly available and was published in the journal Neurosurgery in May 2025.
You can access the guidelines and supporting materials on the Alliance to Cure Cavernous Malformation website. The guidelines are also available as a PDF below.
This summary complements CAUK’s existing resources for professionals, including information on the ‘Cavernomas: A Randomised Effectiveness (CARE) Study’ led by the Chair of CAUK’s Medical Advisory Board, Professor Rustam Al-Shahi Salman. For further information on this study please visit our CARE Study webpage.
Medical Advisory Board
Our Medical Advisory Board brings together the UK’s leading clinical and scientific experts in cavernoma, alongside patient and public involvement (PPIE) representatives. This multidisciplinary group ensures that Cavernoma Alliance UK’s work is guided by the latest research and clinical best practice, while remaining grounded in the experiences of those directly affected by the condition.
The Board is co-led by:
Professor Rustam Al-Shahi Salman, Professor of Clinical Neurology at the University of Edinburgh (Neurology Lead)
Professor Diederik Bulters, Professor of Neurosurgery, Wessex Neurological Centre, University Hospital Southampton (Neurosurgical Lead)
We are also honoured to have Mr Neil Kitchen, Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery and Director of the Gamma Knife Unit, as our Patron.
To learn more and view the full list of members, please visit our Advisory Board page.