CARE Collaborative Approved for an Engagement Award for Advancing Research in Coronary Anomalies Through Capacity Building and Community Engagement
The CARE (Coronary Anomalies Research and Engagement) collaborative is a group of investigators from Boston Children’s Hospital, Children’s Hospital of Philadelphia, Dell Children’s Medical Center, Texas Children’s Hospital, the University of Texas at Austin, and parents of patients with anomalous aortic origin of a coronary artery (AAOCA). The collaborative has been approved for a funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the engagement of patients with AAOCA and their families to develop a patient centered outcomes research agenda.
Dr. Carlos Mery, Congenital Heart Surgeon, will lead the engagement project at the University of Texas at Austin. Dr. Meena Nathan will be the site Principal Investigator (PI) at Boston Children’s Hospital, Dr. Julie Brothers will be the site PI at Children’s Hospital of Philadelphia and Dr. Silvana Molossi will be the site PI at Texas Children’s Hospital. The project will focus on engaging AAOCA patients and their families to identify key gaps in care and meaningful patient-centered outcomes through qualitative research methods and online surveys, while also establishing a stakeholder network to stimulate research in this field. The project aims to connect with a diverse range of AAOCA patients and their families across the United States to identify and prioritize their most critical research questions about AAOCA.
“From a parent’s perspective, discovering your child has AAOCA is shocking and stressful. Everyday life and the management of things that were once normal, like sports and exercise, now create an immense amount of fear and anxiety. And because there is currently not a clear roadmap for treatment, parents must make life and death decisions and assess lifestyle risks the best they can for their individual child. That’s why studies that can capture patient-centered outcomes research and create a network for those with AAOCA are so vitally important.” - CARE Collaborative Patient Parent Partners
PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
We hope to foster a community of AAOCA patients and AAOCA patient parents to provide support, resources and hope. Please stay tuned for our upcoming events and future posts.
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