Criteria and Application Process
Alliance to Cure Cavernous Malformation Clinical Centers and Centers of Excellence are recognized by Alliance to Cure Cavernous Malformation 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 Alliance to Cure Cavernous Malformation Scientific Advisory Board. These guidelines were published in the journal Neurosurgery in May 2017 and on our website at http://www.alliancetocure.org/CCMGuidelines.
Depending on the expertise at each institution, Clinical Centers and Centers of Excellence may treat only adults, only pediatric, or both adult and pediatric cases. Clinical Centers and Centers of Excellence are committed to future participation in a network of clinical drug trial centers. Some Clinical Centers also have active clinical research programs.
Clinical Centers are ranked as a Clinical Center or as a Center of Excellence, reflecting the number of patients, 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@alliancetocure.org for an application.
Clinical Centers
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 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.
Center of Excellence
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 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 onsite 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.
Benefits
Clinical Center status is associated with the following benefits:
- Referral of patients by Alliance to Cure Cavernous Malformation to your Clinical Center.
- Listing of your 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 your Medical Director in the Alliance to Cure Cavernous Malformation Clinical Center Director Committee.
- The inclusion of your Medical Director (and other faculty members as appropriate) in relevant communications from Alliance to Cure Cavernous Malformation. The inclusion of your Center in the planning process of various Alliance to Cure Cavernous Malformation programs as appropriate.
Application Process
- Centers should complete the Alliance to Cure Cavernous Malformation Clinical Center Application. Please contact Connie Lee at clee@alliancetocure.org for an application. Please include curriculum vitae for all core faculty.
- Completed applications should be emailed to clee@alliancetocure.org.
Upon receipt of the application:
- Alliance to Cure Cavernous Malformation will review the application for completeness.
- If the application indicates minimal criteria have been met for either Clinical Center or Center of Excellence status, the applicant will be invited to participate in a one-hour video conference with Alliance to Cure Cavernous Malformation Scientific Advisory Board members. All key faculty should attend this conference. The purpose of the conference is to verify the faculty’s understanding of the Clinical Care Consensus Guidelines and to assure that proper coordination of care protocols are in place. Written feedback will be provided to the applicant after this conference.
- The application process for Clinical Centers may include a site visit by the applying center Medical Director and Nurse Coordinator to a Clinical Center of Excellence for a shadow experience.
- Alliance to Cure Cavernous Malformation 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 will receive a half-day site visit from Alliance to Cure Cavernous Malformation executive staff. All designated key personnel will be available for at least a brief visit.
- Alliance to Cure Cavernous Malformation will work with your marketing department to publicize the Clinical Center or Center of Excellence designation. We encourage Centers to set up a photo opportunity and issue a press release. Alliance to Cure Cavernous Malformation will encourage patients to attend this opportunity as well as any luncheon or educational event that the Center may offer.
- 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 and Centers of Excellence may be placed on probationary status to give time to address deficiencies.
- Alliance to Cure Cavernous Malformation will designate a Clinical Center Liaison within our organization as your point of contact.
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 which 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 their clinic.
- The Clinical Center will maintain open communication with Alliance to Cure Cavernous Malformation by contacting the Clinical Center Liaison whenever issues develop at your clinic related to the Alliance to Cure Cavernous Malformation community.
Updated 3.15.20
