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The Brain Vascular Malformation Consortium (BVMC)

The BVMC is an integrated group of academic medical centers, patient support groups, and clinical research resources dedicated to conducting clinical research in different forms of brain vascular malformations and improving the care of patients with Sturge-Weber syndrome, Cerebral Cavernous Malformations (CCM), and Hereditary Hemorrhagic Telangiectasia (HHT). Funded by the National Institutes of Health (NIH), the BVMC is part of the Rare Diseases Clinical Research Network. The operations of the BVMC are directed from the University of California San Francisco and the primary BVMC study sites which include Duke University Medical School, Harvard Medical School-Children’s Hospital of Boston, St. Michael's Hospital Toronto, University of New Mexico, Nationwide Children’s Hospital, Barrow Neurological Institute, Wayne State University, Kennedy Krieger Institute/JHU, Emory University, Laser and Skin Surgery Center/NYU, Baylor College of Medicine-Texas Children’s Hospital.

 

More Information About the BVMC

The BVMC is pleased to continue formal and informal collaborations on disease specific research with this endeavor. By information sharing, the patient advocacy groups and their medical/scientific advisors provide valued support, referrals and resources for families in search of education, awareness and hope through research. Together the organizations and families increase the pace of discovery and provide hope for a brighter future for their loved ones living with these rare diseases.

The BVMC will establish a large longitudinal cohort of patients and biomarker specimens. Among the primary BVMC centers, approximately 600 SWS patients, 800 CCM patients, and 3500 HHT patients will be followed in the cohort. A comprehensive set of clinical, biomarker and/or laboratory data will be collected on patients in the BVMC longitudinal studies as well as biological specimens. We will also conduct clinical trials of promising new therapeutic agents. Patients need not be enrolled in all studies to participate in BVMC activities.

Although each of the BVMC centers are expert centers for the evaluation and management of patients with these forms of brain vascular malformations, the goal of the BVMC is not to provide care, but to conduct research. However, it is anticipated that patients and physicians will wish to refer patients for the dual purpose of clinical evaluation and potential research participation, and the BVMC investigators welcome such interaction. The patient advocacy groups remind patients to review their lifetime insurance caps and to make the clinical evaluation and expense with that in mind.

BVMC investigators and patient advocacy groups are extremely excited about the potential for the BVMC to become the focal point of patient-oriented clinical investigation in brain vascular malformations for many years. The generous support of the NIH has provided us with the resources necessary to create this ongoing clinical research infrastructure.

 

Mission

The mission of the Brain Vascular Malformation Consortium is to conduct clinical research and clinical trials to learn more about these diseases with the goal of developing new and better treatments to improve the care of patients with brain vascular malformations. We also seek to provide up-to-date information for patients to help them manage their diseases and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities.



Goals of the Brain Vascular Malformation Consortium:

  • Enroll a large group of patients with SWS, CCM and HHT into observational cohort studies (where subjects are followed over time and clinical, laboratory and radiological data – as well as blood samples specifically for research – are collected at regular intervals).
  • Conduct clinical trials of promising new drugs for the treatment of brain vascular malformations.
  • Establish a patient contact registry.
  • Discover new laboratory markers of disease that will lead to better treatment and deeper scientific understanding of the causes of these diseases.
  • Develop improved methods for studying brain vascular malformations.
  • Work with the patient advocacy groups to help those patients who wish to be involved in research connect with those doctors conducting the research.
  • Help other scientists do more research on brain vascular malformations by providing specimens and clinical data from the BVMC for analysis.
  • Train new, young investigators in the field of brain vascular malformations.
  • Construct and maintain an electronic website resource with significant information for clinicians, researchers, and patients.