Mayo Clinic Hospital – St. Mary’s Campus, Rochester, MN

Mayo Clinic COE Award Ceremony
Dr. Connie Lee, Alliance to Cure Cavernous Malformation, and Dr. Kelly Flemming, Medical Director, Mayo Clinic CCM Center of Excellence

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

Eugene Scharf, MD

Robert D. Brown, Jr., MD

Geneticist:  Ralitza Gavrilova, MD

Neuroradiologist: Waleed Brinjikji, MD

Nurse Coordinators: Jaime Hanson

Additional Faculty:

Michael Link, MD, Skull Base Neurosurgery

Lorenzo Rinaldo, MD, Cerebrovascular 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

Zafer Keser, 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. 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. Since 2015, we have enrolled 450 people with CCM into a prospective cohort study and followed them over time in an attempt to answer these questions that are important to people with CCM.  We are further assessing the role of AI (artificial intelligence) and machine learning in determining bleed risk in CCM.

We also participated in the Trial Readiness Project for Cavernous Angioma with Symptomatic Hemorrhage which will help researchers design medication studies for patients with CCM. We are also currently participating in a Cavernous Angioma Symptomatic Hemorrhage blood biomarker study for patients with CCM in conjunction with the University of Chicago and others.

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 02.15.2024