CCM Center Program

CCM Center Program highlights

• The Alliance to Cure Cavernous Malformation provides two levels of designations for institutions with experience in CCM care (“CCM Centers”):
  • CCM Centers of Excellence (COEs)​
  • ​CCM Clinical Centers
• To learn more about our current centers, please visit the CCM Centers of Excellence and Clinical Centers page.
• The designations are based on patient volume, specialist staffing, CCM research, professional and patient education​.
• CCM Centers can see pediatric, adult, or patients of all ages.​
• Designation requires the ongoing satisfaction of program criteria and the periodic renewal of CCM Center status via an application.
• Center designation is independent of any financial arrangements, such as payment of a sponsorship fee to the Alliance or the Alliance’s funding of research at a designated Center.

Application Process

• Each interested institution must apply for designation ​via an application. Please contact Katie Garbarini at katie@alliancetocure.org for an application.
• Completed application and core faculty CVs must be sent to katie@alliancetocure.org​
• The Alliance to Cure Medical Advisory Board will interview the prospective center medical director and/or co-director(s) via video.​
• The Medical Advisory Board votes on a potential designation.

CCM Program Criteria

Clinical Center Designation Criteria

To achieve Clinical Center status, a facility must meet the following criteria:

• 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 Center of Excellence and Clinical Center Faculty Meetings, enabling regular communication with other clinicians.
• 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 multidisciplinary management of CCM patients. Pediatric facilities may substitute a pediatric neurologist for a neurologist with specialized training in cerebrovascular disease.
• 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.

Center of Excellence Designation Criteria

To achieve Center of Excellence status, a facility must meet the criteria for a standard Clinical Center plus all of the following:

• The Center of Excellence must 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.
• The Center of Excellence maintains 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 CCM research project.
• The Center of Excellence hosts at least one Grand Rounds or medical education event per year.
• The Center of Excellence organizes 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.
• The Center of Excellence will serve as a demonstration site for new centers applying to become Alliance to Cure Cavernous Malformation Clinical Centers.
• The Center of Excellence sees at least 50 CCM patients per year.

Scope of Relationship

• In addition to meeting minimum standards for Clinical Centers described above, the Director/Co-Director will maintain professional conduct in accordance with their institutional policy.
• If Alliance to Cure Cavernous Malformation becomes aware of any serious professional misconduct that is under inquiry by the institution, the Clinical Center will name a colleague to temporarily assume his/her role during the inquiry period.
• During the inquiry period, the Alliance to Cure Cavernous Malformation Clinical Center will be placed on provisional status.
• The Clinical Center will not solicit Alliance to Cure Cavernous Malformation to raise funds on behalf of its clinic.

Designation Benefits

Clinical Center status is associated with the following benefits:

• Listing of the Center as a Clinical Center or Center of Excellence on the Alliance to Cure Cavernous Malformation website and in the Alliance to Cure Cavernous Malformation Newsletter.
• The inclusion of the Medical Director in the Alliance to Cure Cavernous Malformation Clinical Center Director Committee.
• The inclusion of the Medical Director (and other faculty members as appropriate) in relevant communications from Alliance to Cure Cavernous Malformation. The inclusion of the Center in the planning process of various Alliance to Cure Cavernous Malformation programs as appropriate.

Updated 1/14/2026.