Clinical Care Guidelines for Cerebral Cavernous Malformations (CCM), a Rare Brain Disorder – Available Online

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CCM clinical management guidelines aim to educate patients, care providers & physicians; increase level of patient care; and, support establishment of clinical centers of excellence.

Dr. Cornelia Lee, Founder, President & CEO of Angioma Alliance remarks, “Publication of these guidelines is a major milestone for Angioma Alliance and the clinical community that provides care to our patients."

Angioma Alliance, a 501c3 organization dedicated to raising awareness of cerebral cavernous malformations (CCM) and driving research for a cure, announces the publication of Synopsis of Guidelines for the Clinical Management of Cerebral Cavernous Malformations: Consensus Recommendations Based on Systematic Literature Review by the Angioma Alliance Scientific Advisory Board Clinical Experts Panel.

CCM is a debilitating vascular disorder of the brain. Often misdiagnosed, CCM can cause patients to suffer headaches, seizures, and, most severely, hemorrhagic stroke. Despite intense clinical research efforts to develop a treatment for CCM, brain surgery remains the only curative option. These guidelines aim to benefit the patient and clinical communities by providing a consensus for CCM diagnosis, monitoring, and the treatment of lesions or their manifestations, such as epilepsy or hemorrhage. The Synopsis of the Guidelines is available online at https://doi.org/10.1093/neuros/nyx091 and in print in the May issue of Neurosurgery.

According to Dr. Issam Awad, Chairman, Angioma Alliance Scientific Advisory Board, Corresponding Author for the Guidelines, and Director of Neurovascular Surgery at the University of Chicago, "For too long, information about the clinical care of cavernous angiomas [CCMs] has been published and studied by few experts in the field. And researchers have discussed the latest scientific discoveries with little translation to clinicians. These consensus guidelines, for the first time, carefully mine all the published evidence without selection or bias, and present it in the form of simple answers to pressing clinical questions. The recommendations are weighed based on the quality and certainty of the evidence. These will be an immense help to clinicians, while highlighting areas of uncertainty and knowledge gaps where research is sorely needed. The bar has been raised for all of us, as we get with the guidelines!"

In an effort to raise the bar for clinical care as well as facilitate and expedite research for a cure, Angioma Alliance has begun to certify national clinical centers of excellence. At its foundation, each center must meet or exceed the standard level of care presented by these guidelines. Dr. Cornelia Lee, Founder, President & CEO of Angioma Alliance remarks, “Publication of these guidelines is a major milestone for Angioma Alliance and the clinical community that provides care to our patients. It is the vision of Angioma Alliance to bring a consistent level of care to patients regardless of the clinical setting in which they are seen and to draw a road map for future research.”

The full-length consensus guidelines, similarly peer-reviewed by Neurosurgery, also identifies knowledge gaps and controversies of opinion within current practice that influence the best clinical judgment in individual cases. The authors include clinician members of the Angioma Alliance Scientific Advisory Board and invited experts who assisted with specific topics. The full-length guidelines are available online at http://www.angioma.org/CCMGuidelines

About Angioma Alliance
Angioma Alliance is a national 501c3 nonprofit patient advocacy and research organization whose mission is to inform, support and empower individual affected by cavernous angioma and drive research for better treatments and a cure.

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Amy Akers

Stephanie Alband
@AngiomaAlliance
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