Since 2021, CLOVES Syndrome Community has supported the work of Dr. Bryan Sisk, Assistant Professor of Pediatric Hematology and Oncology at Bioethics Research Center with conducting a research study titled “Vascular anomalies communication” (VACOM). Vascular anomalies are a group of rare disorders that can be disfiguring, painful, and even life-threatening. However, no researchers have explored or categorized the needs or barriers experienced by these families. The study incorporates interviews and surveys with caregivers and adult patients with vascular anomalies. In this 2-year study, we have learned about care and communication experiences from the patients’ and caregivers’ perspectives. We have also learned how these experiences affect quality of life and wellbeing.
We are delighted to share the first publication from this study here: https://clovessyndrome.org/wp-content/uploads/2022/07/Pathways-Manuscript-Published-2022.pdf
These findings will be essential to develop future interventions to improve care and communication for families living with CLOVES Syndrome.