Recognized as a Center of Excellence on 10/16/2017, Public Announcement
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Phone: (507) 538-1036
Address: 200 First Street SW, Rochester MN 55905
Number of Outpatient CCM appointments annually: 75
Number of Inpatient CCM patient days annually: not known
Number of CCM research publications, 2012-2020: 35
Faculty
Medical Director: Kelly Flemming, MD, Department of Neurology
Co-Director: Giuseppe Lanzino, MD, Department of Neurosurgery
Additional Cerebrovascular Neurologists:
Deena Nasr, DO
Geneticist: Ralitza Gavrilova, MD
Neuroradiologist: Waleed Brinjikji, MD
Nurse Coordinators: Deb Herzig and Jody Covalt
Additional Faculty:
Michael Link, MD, Skull Base Neurosurgery
Lorenzo Rinaldo, MD, Neurosurgery
Jimmy Fulgham, MD, Cerebrovascular Neurology
James Klaas, MD, Cerebrovascular Neurology
Irene Meissner, MD, Cerebrovascular Neurology
Jon Graff-Radford, MD, Cerebrovascular Neurology
Fredric Meyer, MD, Cerebrovascular Neurology
Summary of the Mayo Clinic Research Program
Our main research interest is aimed at trying to understand the natural history of CCM and what medications, medical history, lifestyle factors, and activities influence lesion activity. Natural history refers to what happens to people when there is no intervention, specifically, how many people with CCM bleed if surgery is not recommended or possible. To date, there is no modifiable risk factor for CCM which leaves patients anxious and feeling a lack of control. There are a number of concerns from patients that certain medications (e.g., blood thinners), medical conditions (concussion, pregnancy), or activities (weightlifting) influence CCM activity. Thus, we are enrolling patients into a prospective cohort study in an attempt to answer these questions that are important to patients. We review the medical record of each patient enrolled, ask them to fill out an initial survey, interview them when needed, and send yearly follow up questionnaires. Over time, we are seeking to have over 250 patients, each with 3-5 years of follow up to help answer these questions.
We are also a recruitment site for the Trial Readiness Project for Cavernous Angioma with Symptomatic Hemorrhage. More information about this major project can be found on the Mayo Clinic website.
Another interest for which we are currently recruiting is to assess the quality of life in patients with brainstem cavernous malformations. The goal would be to 1) validate a quality of life questionnaire; 2) determine the short and long-term quality of life in patients with and without surgery; 3) understand what drives the quality of life in these particular patients. This information would provide patients with important information to base decisions on whether to have surgery or to observe their cavernous malformation.
Patient Education includes a dedicated web page for CCM and a CCM-specific educational packet given to each patient.
Medical Provider Education includes Grand Rounds, dissemination of the Alliance to Cure Cavernous Malformation Clinical Care Consensus Guidelines, and the inclusion of CCM in medical school training.
Last updated 08.10.23