Alliance to Cure Cavernous Malformation Recognizes Stanford Health Care as a Center of Excellence

June 17, 2022

Alliance to Cure Cavernous Malformation Recognizes Stanford Health Care as a Center of Excellence

Alliance to Cure Cavernous Malformation has designated Stanford Health Care in Stanford, California a Center of Excellence in the treatment of cavernous malformations. The Stanford Health Care Neuroscience Health Center includes a comprehensive Vascular Malformations Clinic that treats intracranial and spinal vascular malformations. For more than 30 years, the clinic has treated both adult and pediatric patients.

Stanford Health Care’s Cavernous Malformation program is led by Gary Steinberg, MD, PhD, Professor of Neurosurgery, and Neil Schwartz, MD, PhD, Clinical Professor of Neurology & Neurological Sciences, along with their comprehensive, multidisciplinary team of professionals.

Stanford Health Care is now an active site for the REC-994 clinical trial, the goal of which is to determine the safety and effectiveness of a research medication in the treatment of cavernous malformations for patients who either do not wish to have surgery or are not surgical candidates. The researchers are also participating in a data collection study to better understand risks associated with familial cavernous malformations.

“The Alliance to Cure Cavernous Malformation is thrilled to welcome Stanford Health Care into our network of Centers of Excellence. Their team has demonstrated an unwavering commitment to providing expertise, multidisciplinary care, follow up and research options to patients and families affected by cavernous malformation,” said Connie Lee, Psy.D. Founder and CEO of the Alliance to Cure Cavernous Malformation. “This Center of Excellence designation is well-earned, and we congratulate Dr. Steinberg, Dr. Schwartz, and their team on this achievement.”

A cavernous malformation, sometimes referred to as a cerebral cavernous malformation, angioma, cavernous angioma, “cav mal”, or cavernoma, is a raspberry-shaped collection of abnormal blood vessels with thin, leaky walls, most often found in the brain and spinal cord. Cavernous malformations can grow at any time, including during childhood, though they are most likely to become symptomatic when a patient is between the ages 20-40 years old.

The Alliance to Cure Cavernous Malformation is a patient/family advocacy organization dedicated to informing, supporting and educating those impacted by cavernous malformations that drives research for better treatments and a cure. To achieve recognition as a Center of Excellence, hospitals are required to meet or exceed the rigorous clinical care consensus guidelines that were developed and are maintained by the Alliance to Cure Cavernous Malformation Scientific Advisory Board. These include, but are not limited to:

  • Designating a multidisciplinary board of clinical specialists, including cerebrovascular neurosurgeons; vascular, epilepsy, and pediatric neurologists; neuroradiologists; and geneticists who all collaborate in the diagnosis and management of patients with cavernous malformations.
  • Having at least two additional specialty physicians with cavernous malformation expertise in any of the following disciplines: pediatric neurology, pediatric neurosurgery, dermatology, or neuro-ophthalmology.
  • Maintaining an active clinical research program with a history of publications that may include natural history studies, comparative treatment outcomes research, genetics/genomics research, and/or clinical drug trials. The Center of Excellence must have one active IRB-approved cavernous malformation research project.
  • Hosting at least one Grand Rounds per year.
  • Organizing at least one Patient Education event annually either independently or in collaboration with Alliance to Cure Cavernous Malformation. The event may be on-site, or in the community.
  • Serving as a demonstration site for new centers applying to become Alliance to Cure Cavernous Malformation Clinical Centers.
  • Treating at least 50 cavernous malformation patients per year.

More information is available on our website at CCM Centers of Excellence Criteria and Application-Alliance to Cure Cavernous Malformation