Baptist Health and Wolfson Children’s Hospital designated as Clinical Center for treatment of uncommon blood vessel disease

Baptist Health and Wolfson Children’s Hospital were recognized as a designated Clinical Center by the Angioma Alliance for the treatment of cerebral cavernous malformations (CCM) in both adults and children.

A cerebral cavernous malformation, also known as a cerebral cavernous angioma or cavernoma, is a raspberry-shaped collection of abnormal blood vessels with thin, leaky walls, most often found in the brain and the spinal cord. CCMs can grow at any age, including in young children, though they are most likely to become symptomatic when a person is between ages 20-40.

Wolfson Children’s is the first children’s hospital in Florida to receive this designation and the only pediatric hospital in the southeast. Baptist Health is the only designated CCM Clinical Center in the Northeast Florida region.

“It’s an honor to be the first children’s hospital in Florida to receive this designation,” said Philipp Aldana, MD, co-medical director of the Walter and Michelle Stys Neuroscience Institute at Wolfson Children’s and pediatric neurosurgeon at the UF College of Medicine – Jacksonville. “Our team has worked closely with the Angioma Alliance to move this program forward as we are committed to providing outstanding care closer to home for children and families affected by CCMs. We look forward to raising visibility for this complex disease and helping patients get faster access to optimized treatments.”

Angioma Alliance is a patient/family advocacy organization dedicated to informing, supporting and mobilizing those impacted by CCMs and driving research for better treatments and a cure. Baptist Health and Wolfson Children’s were required to meet specific criteria to achieve CCM Clinical Center status including, but not limited to:

• Designating a medical director or co-directors
• Designating multidisciplinary board-certified specialists, including a cerebral neurosurgeon; a neurologist with cerebrovascular specialization or pediatric neurologist; an epileptologist; a neuroradiologist; a nurse coordinator; and a geneticist who all collaborate for the diagnosis and management of patients with CCM
• Meeting or exceeding all consensus guidelines approved by the Scientific Advisory Board of Angioma Alliance
• Establishing a single point of entry, allowing all appointments to be scheduled with one call
• Providing coordinated appointments for patients over no more than two days, reducing the travel burden on out-of-town patients
• The complete list of criteria for a CCM Clinical Center is available on the Angioma Alliance website.

“Only one in 500 people have a cerebrovascular cavernous malformation. While most people will have no symptoms, the condition can be devastating,” explained Ricardo Hanel, MD, PhD, neurosurgeon at Baptist Health. “Patients and families facing this diagnosis search for a team with expansive expertise that will create an individualized care and treatment plan. We’re honored to provide this coordinated, compassionate care at Baptist Health and Wolfson Children’s Hospital and to be recognized by the Angioma Alliance for our CCM program.”

The designated, multidisciplinary team at Baptist Health consists of:

• Ricardo Hanel, MD, PhD, neurosurgeon at Baptist Health; director of Baptist Neurological Institute; co-medical director of the CCM program at Baptist Health
• Philipp Aldana, MD, co-medical director of the Stys Neuroscience Institute at Wolfson Children’s and pediatric neurosurgeon with the UF College of Medicine – Jacksonville; co-medical director of the CCM program at Baptist Health
• Harry Abram, MD, pediatric neurologist with Wolfson Children’s and Nemours Children’s Health, Jacksonville
• Noemi Cintron, BSN, RN, nurse coordinator, CCM Program at Baptist Health and Wolfson Children’s Hospital
• Scott Dellorso, MD, vascular neurologist at Baptist Health
• Benjamin Ludwig, MD, diagnostic radiologist with Radiology Partners
• Chetan Shah, MD, pediatric diagnostic neuroradiologist, Wolfson Children’s and Nemours Children’s Health, Jacksonville
• Pamela Trapane, MD, pediatric geneticist, medical director for the Duran Genetics Center at Wolfson Children’s and UF College of Medicine – Jacksonville

"Angioma Alliance is excited to welcome Baptist Health and Wolfson Children's Hospital into our network of CCM Clinical Centers. Their teams have demonstrated a commitment to providing integrated multidisciplinary care to patients with cerebral cavernous malformations,” said Connie Lee, PsyD, chief executive officer of Angioma Alliance. “This potentially devastating brain and spinal cord blood vessel disease affects several thousand Jacksonville-area residents, and it is reassuring for our families to know there are local doctors who understand the disease and are ready to help."