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Consortium of iNvestigators of Vascular AnomalieS
The Consortium of iNvestigators of Vascular AnomalieS (CaNVAS) is a multi-institutional research consortium founded by a group of pediatric hematologist/oncologists and patient advocacy groups to address the rare nature of vascular anomalies. The need for this consortium stems from the paucity of prospective multicentered research in this field, particularly as it relates to novel therapies and outcome studies.
CaNVAS is organized to foster the diffusion and exchange of ideas through scientific meetings, research trials, and publications. The operation of CaNVAS adheres to the following values: collaboration, credibility, curiosity and commitment to care.
Working collaboratively with the vascular anomalies community worldwide, researchers hope to quickly characterize the effect of COVID-19 on patients with vascular anomalies and understand the impact of risk factors, such as genotype, prior vascular anomaly complications, or vascular anomaly disease-related medications, on health outcomes.
Complex lymphatic anomalies (CLA) with bony involvement consist of a spectrum of complex vascular anomalies characterized by osteolysis due to intraosseous proliferation of angiomatous structures and lymphatic malformations, resulting in progressive resorption and destruction of bone. A steering committee was assembled to develop the first multidisciplinary, prospective study documenting the natural history and outcome of children with CLAs with bone involvement. Combining the expertise and resources of subspecialists throughout North America, we propose to collect clinical, laboratory, radiographic, and quality of life data on these patients undergoing supportive care and standard-of-care interventional therapies.
Anticoagulation Effects on Quality of Life in Patients with Slow-Flow Vascular Malformations
Patients with certain vascular malformations can undergo clotting, bleeding, nerve pain, and decreased quality of life. Therefore, we want to explore how blood thinners (as part of their standard of care) can affect a patient’s quality of life. We will monitor patients for up to 12 weeks and evaluate their quality of life through the PedQL validated survey. By doing this study, we hope to learn more about how and which patients could benefit from the treatment of blood thinners for their vascular malformation.
Denise Adams, MD
Michael Jeng, MD