Breaking news!

At a March 12, 2022 webinar, Dr. Sisk and Dr. Kerr announced encouraging progress with Phase I interviews with parents and adult patients and plans for the Phase II for the VACOM study begun last summer and a preview of the next steps.

They are also beginning recruitment for a new VACOM project designed to explore the experiences of older adults (65 years or older) with vascular anomalies through a series of interviews and oral histories.

If you are interested in participating in the 65 and older interviews click the link below.

The webinar was recorded for those who could not attend and can be viewed on our YOUTUBE channel.

Register HERE for over 65 VACOM interview

Dr. Bryan A. Sisk, Assistant Professor Pediatric Hematology and Oncology, Bioethics Research Center Washington University School of Medicine

Dr. Anna M. Kerr Department of Primary Care Heritage College of Osteopathic Medicine Ohio University

Dear K-T community:
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. Yet, 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 patients' and caregivers' perspectives. We will also learn how these experiences affect quality of life and wellbeing. We will share our findings with the K-T and CLOVES communities 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.

Join us on Saturday, June 26th, 2021 at 1:00 pm EDT to learn how your experience can make a difference in the near future. Register on the webinar info page here.

Hope to see you then!

Dr. Bryan Sisk and Dr. Anna Kerr

Page last updated March 16, 2022