Last year, the Washington University Vascular Anomaly (VA) research team conducted an anonymous national survey to better understand hematologists’ and oncologists’ experiences, confidence, and willingness to care for adults with VAs. The goal was to identify gaps in knowledge, barriers to care, and motivating factors for clinicians managing this complex patient population.
The study findings, published in the Journal of Thrombosis and Hemostasis, revealed a strong need for additional education and clinical support for adult hem/onc physicians. Respondents highlighted the importance of accessible educational materials, opportunities to consult with experts, and the development of a multidisciplinary network to improve care coordination for patients with VAs.
In response to this feedback, the team developed The Vascular Anomaly Care Access program (VAccess), a free, web-based platform designed to support clinicians and patients. Through VAccess.org, clinicians can submit questions to VA specialists, access high-yield educational content, locate multidisciplinary vascular anomaly centers across the U.S., and share patient-facing resources.
Within VAccess, this team also developed the Vascular Anomaly Network (VAN), the largest multidisciplinary network for VA specialists in the US. The overarching goal of VAN is to support the advancement of care and research for VAs by (1) providing education for VA clinicians and researchers along all stages of their career, (2) disseminating best practice and standardizing care for VAs, and (3) facilitating and enhancing research collaborations. The VAN website and application portal can be found at VAccess.org.
Washington University also offers a multidisciplinary VA Clinic for consultation and referrals of children and adults with VAs. Drs. Bryan Sisk and Leo Shmuylovich co-direct this multidisciplinary team which provides evidence-based and novel care and interventions. Clinicians with a strong interest in or access to patients with VAs are encouraged to join the (VAN) via VAccess to connect with specialists nationwide.
By increasing awareness of these resources and promoting collaboration, the VAccess initiative aims to improve timely, informed, and coordinated care for adults with VAs and their families.