We’re pleased to be supporting Dr. Bryan Sisk’s research study titled “Vascular anomalies communication” (VACOM) with a $10,000 grant. Please read about this research study below.
We’ll share additional information with our community soon about how you can participate in this study.
Vascular anomalies are a group of rare disorders that can be disfiguring, painful, and even life-threatening. In our clinical experiences, families affected by vascular anomalies have described multiple barriers to care and communication, such as difficulty accessing care from experts, persistent uncertainty about the diagnosis, and long-term consequences, insufficient information to guide decisions, and the necessity of persistent parental advocacy to ensure the child receives adequate medical care. However, no researchers have explored or categorized the needs or barriers experienced by these families.
We are performing a study that will incorporate interviews and surveys with caregivers and adult patients with vascular anomalies. In this 2-year study, we will learn about care and communication experiences from the patients’ and caregivers’ perspectives. We will also learn how these experiences affect quality of life and wellbeing. We will share our findings with the CLOVES community through interactive webinars at the beginning, middle, and end of the study. We will also share our results with clinicians and researchers who care for patients with vascular anomalies. These findings will be essential to develop future interventions to improve care and communication for these families.
Bryan A. Sisk, MD, MSCI
Pediatric Hematology and Oncology
Bioethics Research Center – Washington University School of Medicine
Anna M. Kerr, PhD
Department of Primary Care
Heritage College of Osteopathic Medicine