Text Size: SMALL  LARGE

Angioma Alliance Recognized Clinical Centers

For an overview of criteria for Centers of Excellence and Clinical Centers as well as information about the application process, please visit our Clinical Center Criteria and Application page.

Centers of Excellence

Current CCM Centers of Excellence include the University of Chicago Medicine, University of New Mexico Health Sciences, Boston Children's Hospital, and Mayo Clinic Rochester.

Curriculum Vitae for key Center of Excellence personnel are available upon request.

--------------------------------------------------------------------------------------------------------------

Boston Children's Hospital

Recognized as Center of Excellence on 9/16/2017

Phone: (617) 919-1379

Address: 300 Longwood Ave, Boston MA 02115

Number of CCM outpatient appointments annually: ~50

Number of CCM inpatient days annually: ~110

Number of CCM research publications 2012-2017: 17

Patients may also be seen at Boston Children's at Waltham, Boston Children's at Peabody, and Boston Children's at Dartmouth.

Faculty

Medical Director and Pediatric Cerebrovascular Neurosurgeon: Edward Smith, MD

Pediatric Neurologist: Michael Rivkin, MD,  Laura Lehman. MD

Pediatric Epileptologist: Phillip Pearl, MD

Geneticist: Siddharth Srivastava, MD

Neurointerventional Radiologist: Darren Orbach, MD

Researcher: Mustafa Sahin, MD, Ph.D.

Nurse Coordinator: Jennifer Klein, MSN-FNP

 

Summary of Boston Children's Hospital Research Program

Boston Children’s Hospital has been actively engaged in clinical and translational research related to cavernous malformations.  The hospital encompasses the Vascular Biology Program (VBP), headed by Dr. Marsha Moses, one of the largest basic and translational research programs in the world focused on vascular disease. There are ongoing protocols for patient-derived cell lines for therapeutic targeting (DFCI 10-417), small molecule drug delivery targeting and urinary biomarker screening (AS 10-076-7) translational work.  There are numerous basic studies, primarily done in the VBP looking at endothelial cell biology and migration.  Lastly, there are several ongoing clinical studies, including a long-term follow-up and outcomes study (CR 127-54-2) for pediatric cavernous malformations.  

Patient Education includes a dedicated web page for CCM, a nurse hotline, and patient lectures at BCH in Boston.

Medical Provider Education includes Grand Rounds and incorporation of CCM in medical school training. 

--------------------------------------------------------------------------------------------------------------

Mayo Clinic Hospital - St. Mary's Campus, Rochester, MN

Recognized as a Center of Excellence on 10/16/2017

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, 2012-2017: 12

Faculty

Medical Director: Kelly Flemming, MD, Department of Neurology

Co-Director: Giuseppe Lanzino, MD, Department of Neurosurgery

Cerebrovascular Neurologist:

      Kelly Flemming, MD

      Lindsy Williams, MD

      Robert D. Brown, Jr., MD

Geneticist:  Ralitza Gavrilova, MD

Neuroradiologist: Waleed Brinkiji, MD

Nurse Coordinators: Deb Herzig and Jody Covall

Additional Faculty:

      Michael Link, MD, Skull Base 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 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 have currently (as of 12/27/2016) enrolled 125 over 2 years.  

Another interest for which we are currently seeking funding 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 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.  

--------------------------------------------------------------------------------------------------------------

The University of Chicago Medicine

Recognized as Center of Excellence on 10/26/2016, Public Announcement

Phone: (773) 702-2123

Address: Duchossois Center for Advanced Medicine, 5758 South Maryland Avenue, Chicago, IL 60637

Number of CCM outpatient appointments annually: ~120

Number of CCM inpatient days annually: ~75

Number of CCM research publications 2011-2016: 26

Patients may also be seen at Evanston Hospital (NorthShore University Health System)

Faculty

Medical Director and Cerebrovascular Neurosurgeon:  Issam Awad, MD, MSc, FACS 

Issam Awad, MD, MSc, FACS is a John Harper Seeley Professor of Neurosurgery and director of  Neurovascular Surgery at the University of Chicago. He is a past Chairman of the Cerebrovascular Section of the American Association of Neurological Surgeons and Congress of Neurological Surgeons and the 51st President of the Congress of Neurological Surgeons. Dr. Awad is a leading cavernous angioma researcher and co-editor of the text Cavernous Malformations. As founding Chairman of the Angioma Alliance Scientific Advisory Board, Dr. Awad provides us with expertise and guidance to effectively facilitate and push the limits of CCM Science.  

Adult Neurology:  James Brorson, MD

Epileptologist: James Tao, MD

Pediatric Neurologist:  Chalongchai Phitsanuwong, MD

Geneticist:  Darrel Waggoner, MD

Neuroradiology:  Gregory Christoforidis, MD

Nurse Coordinator:  Kristina Piedad, RN

 

Summary of University of Chicago Research Program

Issam A. Awad, MD, has led research studies on CCM for nearly three decades. His work helped identify the early natural history and gene loci of CCM, including the discovery of the Common Hispanic CCM1 mutation and more recently the Ashkenazi Jewish CCM2 mutation. He discovered the immune response in CCM lesions, genetic aberrations in lesions themselves, and signaling targets for potential treatment of the disease.

Awad and his research team are currently funded by the National Institutes of Health to study the biology and clinical behavior of CCM. They are developing biomarkers of CCM disease on imaging, including permeability or “subtle leakage” in lesions and brain, and quantitative susceptibility mapping of iron levels in lesions. Their team is also helping to develop blood tests that may predict CCM lesion activity. These studies are aimed at the prediction of lesion behavior and the innovation of drugs that halt lesion development.

Many patients participate in CCM research by allowing the team to analyze the data collected during their enhanced MRI scans. This information is used to discover more about the origin and behavior of each CCM lesion and contributes to the ongoing development of new CCM management strategies. Patients may give blood samples for biomarker research or donate samples of a lesion resected at surgery for research studies. All research involving human subjects is totally voluntary and does not otherwise influence the highest level of clinical care delivered to each patient regardless of participation in research. Research ensures utmost privacy and does not incur patients any additional cost beyond their routine clinical care. Each project is approved by the Institutional Review Board at the University of Chicago Medicine. 

------------------------------------------------------------------------------------------

The University of New Mexico Health System

Recognized as Center of Excellence on 4/8/2017, Public Announcement

Phone:  (505) 272-3160

Address:  915 Camino de Salud, Albuquerque, NM 87131

Number of CCM research publications 2011-2016: 10

Faculty

Medical Director and Vascular Neurologist:  Dr. Atif Zafar

Co-Director and Pediatric Neurologist: Dr. Leslie Morrison

Cerebrovascular Neurosurgeons: Dr. M. Omar Chohan, Dr. Howard Yonas, Dr. Andrew Carlson

Epileptologist: Dr. Jose Padin-Rosado

Geneticist: Dr. Randall Heidenreich

Pediatric Neurology: Dr. James Reese, Dr. John Phillips

Genetic Counselor: Joanne Drautz, CGC

Nurse Coordinator: Noelle Maez, RN


Summary of University of New Mexico Research Program

A primary focus of CCM research at our institution is to identify biological markers or modifiers of the disease and to monitor the progression and severity of CCM in our patients over time.  We aim to collect natural history information (such as presentation of CCM, symptoms, extent of neurological disability, quality of life measures) and tie these to a patient's radiological data (number, size and location of cavernous malformations with note of any evidence of hemorrhage) and blood sample (which is examined for specific cellular components that may be indicative of the disease severity).  With this research, we wish to identify the cellular players that can cause such wide variability of symptoms and radiological findings, even within a single family.  Additionally, there is research being done at UNM that is targeted at incidental findings correlated with the disease that are outside of the central nervous system - such as the prevalence of vertebral hemangiomas in the spine.  There is preliminary research that has sparked our fascination with the gut, as the microbiome may actually be an explanatory piece of the CCM mystery, rather than an incidental finding; we are just beginning our investigations in this area.  We are also interested in the behavioral and emotional elements of CCM, like the psychological and social barriers to genetic testing and the patient perspective of the diagnostic process.   

This research is relevant to patients for several reasons.  First, it allows them more information as to how the disease changes over time; in this way, they can become more knowledgeable as to the possibility for growth or multiplication of lesions as well as the potential for hemorrhage or new symptoms to occur.  Our research aims to identify molecular components that may be responsible for the variability of the disease.  CCM patients regularly ask why it is that their siblings or relatives are so severely affected by the illness while they themselves remain asymptomatic; in studying cellular modifiers and their association with a wide range of symptoms over a large cohort of patients, we hope to be able to answer these types of questions.  Together with our partners at UCSF, our genome-wide association (GWAS) studies are significant for patients because the better comprehension we have of the molecular genetics, the better the opportunities for readiness and participation in clinical trials - trials that may provide a treatment in the future.  In terms of identifying biomarkers, this research is important for patients because it can aid physicians in delivering a proper diagnosis.  For example, if a radiologist were to note adrenal calcifications on the CT of a patient's abdomen or if a dermatologist were to examine a vascular malformation on a patient's skin, it may alert the physician of a potential marker for CCM diagnosis, allowing the patient to more promptly receive a brain MRI and subsequent necessary care.  Radiological studies like our spinal cord malformations and vertebral hemangiomas research can expand patient and physician knowledge of the disease, so as to better understand the disease involvement beyond the brain.  This type of research can make patients more cognizant as to symptoms and findings of which they may not initially be aware when given a CCM diagnosis.  Several areas of research at UNM that are more focused on the psychosocial and behavioral aspects of the disease are relevant to patients because of the emotional burden that is often closely linked to the CCM diagnosis.  As we move forward with these studies, physicians will have a better understanding of the effects of CCM on a patient's behavior, mood and social life, which are very important factors to consider in evaluating a familial disease.  

Patient Education Activities at the University of New Mexico

Family CCM conferences have been held almost annually since 2008. These seminars provide updates to patients and family members for clinical care and research and are provided by both UNM and visiting faculty. They are complemented by research opportunities in the afternoons, including annual clinical research follow-up visits and longitudinal project imaging and follow up sessions. In addition, under a Brain and Behavior Health Institute PCORI grant initiatives, thirty patients and ten clinical/research team members (including the founding president of the national Angioma Alliance, Dr. Connie Lee), had a 3-day training session with the national Alan Alda Center for  Communicating Science. This was followed by monthly meetings of the CCM Patient Partner Advisory group to form the basis of a PCORI grant letter of intent.

 

---------------------------------------------------------------------------------------------------------

Additional Centers of Excellence will be designated on an ongoing basis.

 

Clinical Centers

Clinical Centers will be designated on an ongoing basis. 

 

 

Page last updated 9.9.2017