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Angioma Alliance Clinical Centers


Angioma Alliance Clinical Centers are recognized by Angioma Alliance as providing high quality interdisciplinary care for both sporadic and familial cerebral cavernous malformation patients. The standard of care at the centers is expected to meet or exceed the consensus guidelines recognized by the Angioma Alliance Scientific Advisory Board. These guidelines were published in the journal Neurosurgery in May, 2017 and on our website at http://www.angioma.org/CCMGuidelines.

Depending on the expertise at each institution, Clinical Centers may treat only adults, only pediatrics, or both adult and pediatric cases. Clinical Centers are committed to future participation in a network of clinical drug trial centers. Some Clinical Centers also have active clinical research programs. CCM Clinical Centers 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 in professional and patient education.

Please contact Connie Lee at clee@angioma.org for an application.

Clinical Centers

To achieve standard 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 point of contact for Angioma Alliance and who will ensure continuing compliance with Clinical Center criteria. The Medical Director will participate in the Angioma Alliance 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, neurologist with cerebrovascular specialization, epileptologist, neuroradiologist, nurse coordinator, and 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 Angioma Alliance. 
  • 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 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 Angioma Alliance. 
  • Facility has the capability to perform 3T MRI.
  • Facility must see a minimum of 25 CCM patients per year at time of application.
  • The Clinical Center has at least one nationally known specialist who has been principal investigator of peer-reviewed, published CCM research.
  • Clinical Centers will provide patient referrals to Angioma Alliance.

Clinical Center of Excellence

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

  • The Clinical 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 Clinical 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 Clinical Center of Excellence must have one active IRB-approved CCM research project.
  • The Clinical Center of Excellence hosts at least one Grand Rounds per year.
  • The Clinical Center of Excellence organizes at least one Patient Education event annually either independently or in collaboration with Angioma Alliance. The event may be onsite or in the community.
  • The Clinical Center of Excellence will serve as a demonstration site for new centers applying to become Angioma Alliance Clinical Centers. 
  • The Clinical Center of Excellence sees at least 50 CCM patients per year.

Benefits

Clinical Center status is associated with the following benefits:

  • Referral of patients by Angioma Alliance to your Clinical Center.
  • Listing of your Center as a Clinical Center or Center of Excellence on the Angioma Alliance website and in the Angioma Alliance Newsletter.
  • Inclusion of your Medical Director in the Angioma Alliance Clinical Center Director Committee.
  • Inclusion of your Medical Director (and other faculty as appropriate) in relevant communications from Angioma Alliance. Inclusion of your Center in the planning process of various Angioma Alliance programs as appropriate.

Application Process

  1. Centers should complete the Angioma Alliance Clinical Center Application. Please contact Connie Lee at clee@angioma.org for an application. Please include curriculum vitae for all core faculty. 
  2. There is no cost to apply, but beginning in 2018, there will be a $1000 fee to defer the cost of Angioma Alliance staff travel to your facility for a site visit. 
  3. Completed applications should be emailed to clee@angioma.org

Upon receipt of the application:

  • Angioma Alliance will review the application for completeness.
  • In 2018 and beyond, the application process for Clinical Centers will likely include a site visit by the applying center Medical Director to a Clinical Center of Excellence for a 2-day shadow experience.
  • Clinical Centers will receive a one-day site visit from Angioma Alliance executive staff. All designated key personnel will be available for at least an hour during that day.
  • Following the site visit, Angioma Alliance will discuss and vote on the prospective Center. If a Center is not approved, deficiencies will be communicated and the Center may apply again after one year.
  • Clinical Centers of Excellence will be re-evaluated every 3 years or if there is a change in Medical Director. Clinical Centers will be re-evaluated every 2 years. Clinical Centers may be placed on probationary status to give time to address deficiencies.
  • Angioma Alliance will designate a Clinical Center Liaison within our organization as your point of contact.

Scope of Relationship

  1. 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. 
  2. If Angioma Alliance becomes aware of any serious professional misconduct which is under inquiry by the institution, the Clinical Center will name a colleague to temporarily assume his/her role during the inquiry period. 
  3. During the inquiry period, the Angioma Alliance Clinical Center will be placed on provisional status. 
  4. The Clinical Center will not solicit Angioma Alliance to raise funds on behalf of their clinic. 
  5. The Clinical Center will maintain open communication with Angioma Alliance by contacting the Clinical Center Liaison whenever issues develop at your clinic that are related to the Angioma Alliance community.