Criteria and Application Process
The CCM Clinical Care Consensus Guidelines were published in the journal Neurosurgery in May 2017 and are 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 either a Clinical Center or a Center of Excellence, reflecting patient volume, the number of clinical disciplines with expertise, and the level of involvement in clinical research and 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 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. We request the neurology staff be limited to 5 or fewer providers seeing our patients. This is to ensure provider expertise. 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 the 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 promptly coordinate patient care.
- 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 a 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:
- The Center of Excellence must have at least two additional specialty physicians with CCM expertise. The specialists may be 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, 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, 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 institutions 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 and Center of Excellence status is associated with the following benefits:
- The Alliance to Cure Cavernous Malformation will refer patients to your institution.
- Your institution will be listed as a Clinical Center or Center of Excellence on the Alliance to Cure website and announced in our newsletter.
- The inclusion of your Medical Director in the Alliance to Cure Cavernous Malformation Clinical Center Director Committee.
- The Alliance will include your Medical Director (and other faculty members as appropriate) in relevant communications.
- The Alliance will include your institution in the planning process of various Alliance programs, as appropriate.
Application Process
- Institutions should complete our Clinical Centre/Center of Excellence application. Please contact Connie Lee at clee@alliancetocure.org to request an application. As part of your submission, please include curriculum vitae for all core faculty.
- Kindly email completed applications to CLee@alliancetocure.org.
Upon receipt of the application:
- Alliance to Cure will review the application for completeness.
- If minimal criteria have been met, the applicant will be invited to participate in a one-hour video conference with Alliance to Cure Cavernous Malformation’s Medical Advisory Board representatives. All key faculty should attend unless the Alliance has authorized exceptions. The purpose of the conference is to verify the faculty’s understanding of the Clinical Care Consensus Guidelines and to ensure 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’s Medical Director and Nurse Coordinator to a Clinical Center of Excellence for a shadow experience.
- Alliance to Cure 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 may receive a half-day site visit from the Alliance to Cure executive staff. All designated key personnel will be available for at least a brief visit.
- Alliance to Cure 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 will invite patients to attend this opportunity and 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 them time to address deficiencies.
- Alliance to Cure will designate a Clinical Center Liaison as your point of contact within our organization.
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 becomes aware of a serious professional misconduct inquiry, the Clinical Center will name a colleague to temporarily assume the Director’s role during the inquiry period.
- The Clinical Center will be placed on provisional status during the inquiry period.
- The Clinical Center will not solicit Alliance to Cure to raise funds on behalf of their clinic.
- The Clinical Center will maintain open communication with Alliance by contacting the Clinical Center Liaison whenever issues develop at your clinic related to the Alliance to Cure community.
Updated 10/8/2023
