We’re constantly striving to find new ways to improve the cardiovascular health and well-being of children who have Williams syndrome. We take advantage of the many resources of Boston Children’s, and we collaborate with the Williams Syndrome Association (WSA) to research Williams syndrome and improve general awareness of the condition. Some of our initiatives include:
- Creating and improving advanced imaging to detect, early and accurately, the cardiovascular issues of Williams syndrome
- Refining advanced interventional cardiology and surgical strategies to treat aortic, coronary, and pulmonary vascular abnormalities unique to Williams syndrome
- Use of a simulation algorithm developed to teach trainees about special anesthesia considerations for children with Williams syndrome
- Examining the current state of healthcare delivery in Massachusetts for patients who have Williams syndrome and using this information to develop optimal models of care, including the transition to adulthood
- Participating in a multi-center National Institutes of Health-based Williams syndrome registry and DNA repository, the Collaborative Registry for Williams Syndrome (CReWS), to collect medical, surgical, diagnostic, and neurodevelopmental data