The University of New Mexico is being recognized by the Angioma Alliance as a Clinical Center of Excellence in treating cavernous angioma – only the second such designation in the country.
The Angioma Alliance, an organization for and by individuals and families affected by the condition, says the designation is awarded to clinical centers that provide high-quality interdisciplinary care for both sporadic and familial cerebral cavernous malformation (CCM) patients.
“We’re very proud of our long-standing work in cerebral cavernous malformation and are excited about our recent designation by the Angioma Alliance,” says Leslie Morrison, MD, professor in the Department of Neurology who has directed a major research effort for familial Cerebral Cavernous Malformations at UNM. “Together, we will continue our vital support of patients and families in New Mexico and elsewhere affected by this condition.”
Cavernous angioma refers to mulberry-shaped abnormal blood vessels called caverns. Each cavern is filled with blood and lined by a specialized cell layer called the endothelium. These bubble-like caverns are extremely dilated vessels that leak due to defects in the endothelial cells and other structural components required for normal vessel walls. Patients may present with a single or multiple lesions that can cause a wide variety of symptoms, including seizures, stroke symptoms, hemorrhages and headaches.
For at least 20 percent of those diagnosed, the illness is hereditary. Familial cavernous angioma occurs at a higher rate among Hispanic-American families who trace their heritage to New Mexico. This prevalence in Southwestern Hispanic-American families is due to a specific genetic mutation that has been passed through as many as 16 generations.
According to the alliance, designated clinical centers of excellence are ranked as Standard Clinical Center or Clinical Center of Excellence, reflecting the number of clinical disciplines with expertise, and the level of involvement in clinical research and professional and patient education.
To achieve the alliance’s center of excellence status, a facility must exceed the standard care designation, and:
- Have at least two additional specialty physicians with CCM expertise in any of the following disciplines – pediatric neurology, pediatric neurosurgery, dermatology or neuro-ophthalmology. Children’s hospitals may qualify with one additional specialty;
- Maintain an active clinical research program with a history of publications that can include natural history studies, comparative treatment outcomes research, genetics/genomics research, and/or clinical drug trials. The clinical center of excellence must have one active IRB-approved CCM research project;
- See at least 50 CCM patients per year;
- Host at least one grand rounds per year; and
- Organize at least one patient education event annually either independently or in collaboration with the Angioma Alliance.
For more information on cerebral cavernous malformation research, visit the Brain Vascular Malformations Consortium at https://www.rarediseasesnetwork.org/cms/bvmc or the Rare Diseases Consortium Clinical Research Network at https://www.clinicaltrials.gov, or call (505) 272-3194 to speak with a UNM CCM research coordinator.