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 (SWS), Familial Cerebral Cavernous Malformations (CCM), and Hereditary Hemorrhagic Telangiectasia (HHT). The BVMC is part of the Rare Diseases Clinical Research Network (RDCRN) funded by the National Institutes of Health. The operations of the BVMC are directed from the University of California - San Francisco, which provides research and administrative support to 28 participating sites located across the US, Canada, and the Netherlands.

 

More Information About the BVMC

The BVMC is pleased to continue formal and informal collaborations to advance research in SWS, CCM, and HHT. 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 participation in research studies. 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 cohort of patients that will be followed over time, including approximately 500 SWS patients, 900 CCM patients, and 2400 HHT patients. A comprehensive set of clinical, imaging, biomarker, and laboratory data will be collected, as well as biological specimens. We will also conduct clinical trials of promising new therapeutic agents, and train young investigators in rare disease research in these diseases. Patients need not be enrolled in all studies to participate in BVMC activities.

While 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 to conduct research and not to provide care. 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.

 

Mission

The mission of the Brain Vascular Malformation Consortium is to conduct informative and transformative clinical research and trials to learn more about SWS, CCM, and HHT. Our goal is to develop new and better treatments to improve the care of patients living with brain vascular malformations. We also seek to provide up-to-date information for patients to help them manage their disease 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 with our patient advocacy groups.
  • 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.
  • Identify relevant outcome measures, including patient-reported quality of life, to be used in clinical trials.
  • 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.
  • Attract and train new, young investigators in the field of brain vascular malformations and rare diseases.