The VEDS Collaborative, the community of stakeholders committed to patient-centered research in Vascular Ehlers-Danlos Syndrome (VEDS), will be powered by The VEDS Movement beginning August 1, 2021.
The VEDS Collaborative was initiated in 2017 by Dr. Sherene Shalhub at the University of Washington, in collaboration with Dr. Peter Byers, and John and Dave DeMasi, to bring together researchers, individuals, families, and organizations to collaborate on research initiatives for VEDS. As a result of this work, the largest natural history study for VEDS was launched, and research priorities among individuals and families affected by VEDS were catapulted into the forefront of VEDS research.
“From my perspective, the key elements to the creation of an effective assessment and management plan for patients with VEDS include a comprehensive knowledge of the natural history and patient input into the research priorities. We have created the infrastructure for both and are now moving into the sustainability phase of this work,” said Dr. Shalhub.
The infrastructure and relationships created by the VEDS Collaborative will be moving forward with administrative support from The VEDS Movement to sustain and advance the activities of the VEDS Collaborative. Dr. Shalhub will continue to serve as the leader of the VEDS Collaborative, and the VEDS Collaborative Research Study will be renamed the “VEDS Natural History Study.” The study will remain active with the University of Washington. Information about the VEDS Collaborative and the VEDS Natural History study will be available through The VEDS Movement. The VEDS Movement and VEDS Collaborative websites will be updated in the near future, and a VEDS Collaborative meeting will be scheduled in October during VEDS Action Month.
“We are so grateful for the confidence that Dr. Shalhub has in the Movement, as well as the tremendous accomplishments that the Collaborative has made and will continue to make in the future. We look forward to working further to support the Collaborative in its mission and dedication to research in VEDS,” said Katie Wright, director of The VEDS Movement.
“I am delighted that The VEDS Movement will couple its advocacy work with the mission of the VEDS Collaborative. This union creates a platform to sustain the collaborative research network of stakeholders including patients, families, advocacy groups, and researchers working together towards advancing VEDS care,” said Dr. Shalhub.
About The VEDS Collaborative
The mission of the VEDS Collaborative is to create and sustain a collaborative network of diverse stakeholders, individuals, and organizations, to understand patient needs, and determine the research methods best suited to study the adverse health implications associated with VEDS. The VEDS Collaborative is dedicated to supporting the VEDS community in driving patient-centered outcomes research (PCOR) to improve the management of VEDS and increase the quality of life for people impacted by VEDS. The VEDS Collaborative strategy is to build the infrastructure necessary for researchers to create and sustain partnerships with patients and other stakeholders that will inform their research work, connect stakeholders with the resources and education necessary to empower them as equitable and meaningful research partners, and create cooperative opportunities between patient advocacy organizations and empower them to advance research efforts.
Learn more at vedscollaborative.org
About The VEDS Movement
The VEDS Movement’s mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome. As a division of The Marfan Foundation, the Movement has the support of the Foundation’s Professional Advisory Board, comprised of the leading experts across the country on VEDS, Marfan Syndrome, Loeys-Dietz, and related genetic aortic and vascular conditions.