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UCLA Named CCM Clinical Center by the Alliance to Cure Cavernous Malformation

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UCLA Named CCM Clinical Center by the Alliance to Cure Cavernous Malformation

June 23
04:00 2022
UCLA Health Designated as Clinical Center for Treatment of Cavernous Malformations, a Vascular Disorder of the Nervous System

Hospital recognized by the Alliance to Cure Cavernous Malformation for providing high-quality, interdisciplinary care for cerebral cavernous malformations.

CLA Health has been recognized as a CCM Clinical Center by the Alliance to Cure Cavernous Malformation for the treatment of cerebral cavernous malformations (CCM) in both adults and children. UCLA Health is the only CCM Clinical Center in Southern California. 

A cerebral cavernous malformation, also known as a cavernous angioma or cavernoma, is a raspberry-shaped collection of abnormal blood vessels most often found in the brain and the spinal cord. They are a common cause of stroke, brain hemorrhage, and seizures in otherwise healthy patients. CCMs can grow at any age, including in children, though they are most likely to become symptomatic in young adults.

“The Alliance to Cure Cavernous Malformation is an important resource for patients and families that live with this complex disease, and we have worked side-by-side with them for many years,” said Dr. Anthony Wang, UCLA neurosurgeon. “We are honored to receive this recognition, as we believe that it reflects the elite care, expertise, and dedication that our team at UCLA Health brings to the care of our cavernous malformation patients.”

UCLA Health was required to meet specific criteria to achieve the CCM Clinical Center status including, but not limited to:

• The Clinical Center must have a designated Medical Director or Co-Directors who will serve as the point of contact for Alliance to Cure Cavernous Malformation and who will ensure continuing compliance with Clinical Center criteria. The Medical Director will participate in the Alliance to Cure Cavernous Malformation Clinical Center Director Committee, enabling regular communication with other clinical experts.
• The Clinical Center must have designated Board-certified specialists to include at least one cerebrovascular neurosurgeon, a neurologist with cerebrovascular specialization, an epileptologist, a neuroradiologist, a nurse coordinator, and a geneticist who share an understanding of diagnosis and interdisciplinary management of CCM patients. Pediatric facilities may substitute a pediatric neurologist for a neurologist with cerebrovascular specialization.
• Each Clinical Center must meet or exceed local and national standards of medical care. CCM-specific care standards should equal or exceed all consensus guidelines approved by the Scientific Advisory Board of Alliance to Cure Cavernous Malformation.
• The Clinical Center must have a single point of entry allowing all appointments to be scheduled with one call. Administrative staff must have sufficient knowledge to respond to patient inquiries and coordinate patient care in a timely fashion.
• Imaging, neurosurgery, and neurology must have coordinated appointments over no more than 2 days, reducing the travel burden on out-of-town patients.
• Clinical departments must provide printed patient materials with information about the illness. The materials may either be generated by the facility or be obtained from Alliance to Cure Cavernous Malformation.
• The facility has the capability to perform 3T MRI.
• The facility must see a minimum of 25 CCM patients per year at the time of application.
• The Clinical Center has at least one nationally known specialist who has been a principal investigator of peer-reviewed, published CCM research.
• Clinical Centers will provide patient referrals to Alliance to Cure Cavernous Malformation.

The designated, multidisciplinary team at UCLA Health and Mattel Children’s Hospital consists of:

• Anthony C. Wang, MD, Pediatric and Cerebrovascular Neurosurgery, Co-director
• Jeremiah N. Johnson, MD, Cerebrovascular Neurosurgery, Co-director
• Ana M. Tchicaya, NP, Nurse Practitioner and Clinical Coordinator
• Geoffrey P. Colby, MD, PhD, Cerebrovascular Neurosurgery
• Latisha Sharma, MD, Vascular and Pediatric Neurology
• John M. Stern, MD, Epilepsy Neurology
• Julian E. Martinez, MD, Genetics
• C. Travis Watterson, MD, Pediatric Neuroradiology
• Mersedeh Bahr-Hosseini, MD, Vascular Neurology
• David S. Liebeskind, MD, Vascular Neurology
• Jeffrey L. Saver, MD, Vascular Neurology
• Noriko Salamon, MD, Neuroradiology
• Gary R. Duckwiler, MD, Interventional Neuroradiology

“The Alliance to Cure Cavernous Malformation is excited to welcome UCLA into our network of CCM Clinical Centers.  We look forward to collaborating with them on initiatives that will advance our working relationship.  Their teams have demonstrated a commitment to providing integrated, multidisciplinary care to patients with cavernous malformations,” said Connie Lee, Ph.D., CEO and Founder of Alliance to Cure Cavernous Malformation.  “It is reassuring to know that patients and families who are affected by this potentially devastating brain and spinal cord blood vessel disease can seek medical evaluation, treatment and follow up with UCLA’s team of experts.”

Media Contact
Company Name: Alliance to Cure Cavernous Malformation
Contact Person: Connie Lee, Psy.D, Founder and CEO
Email: Send Email
City: Charlottesville
State: Virginia
Country: United States
Website: www.alliancetocure.org