The Coronary Anomalies Research Education (CARE) Collaborative is a group of clinicians, investigators, and patients/families from University of Texas at Austin, Boston Children’s Hospital, Children’s Hospital of Philadelphia, and Texas Children’s Hospital studying anomalous aortic origin of a Coronary Artery (AAOCA).
NCAF partnered with the CARE Collaborative to participate in research to learn about the unanswered questions and unmet needs of young people born with a Coronary Anomaly (AAOCA) in order to develop a patient-centered research agenda and identify the outcomes that matter most to people
living with coronary anomalies and their family members. Check out the Dissemination Webinar outlining the findings of this study.
The information from this study will allow us to understand
the unanswered questions and gaps in care faced by those
living with AAOCA and their families. This will ultimately allow for the improvement of services available to patients and patient families.
This study was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (20171-UTDMS) and involves researchers from the Texas Center for Pediatric and Congenital Heart Disease, Boston Children’s Hospital, Children’s Hospital of Philadelphia and Texas Children’s Hospital.
This study has been approved by Institutional Review Boards at Boston Children’s Hospital, Children’s Hospital of Philadelphia, University of Texas at Austin, and Texas Children’s Hospital.