It was a great pleasure to share a morning with members of the Cavernoma Alliance UK for one of their regular webinars. The brief was to try and clarify exactly what clinicians are talking about when they refer to "bleeding" from a cavernoma- is it a from of stroke or can it be something more benign? The lecture was kept deliberately brief so that I could field questions from the members about every aspect of living with a cavernoma.
I also wanted to promote the ongoing CARE study-"Cavernoma, A Randomised Effectiveness Study". There remains no high-level evidence to support treatment recommendations for people who develop symptoms from their cavernoma. Most specialists in the field are genuinely uncertain whether it is best intervene after a single symptomatic episode or not given how well many will recover from such an illness. CARE is an effort to improve that evidence base and neurosurgical centres around the United Kingdom are participating. Neurological symptoms such as sensory alteration, seizures or mortar weakness that are attributable to a cavernoma render one eligible for the study.
The study is in a pilot phase to refine what is achievable and funding to support recruitment has been extended to February 2023. With the two thirds of the required 60 participants already on board we look forward to what can be learned. If you are interested in the study speak tot he specialist looking after your cavernoma or contact the Cavernoma Alliance UK who will be happy to point you in the right direction.
