Dear CHSS member,
You have been made aware in the past of plans for the CHSS to embark on a multi-institutional research effort addressing the rare cardiac anomaly referred to as “Anomalous Aortic Origin of a Coronary Artery “ (AAOCA). You may recall the survey questionnaire which was sent in 2007 to CHSS members and their colleagues. A report of the analysis of the results of the survey has been submitted for peer review and hopefully will be published soon. Not surprisingly, it reveals the lack of a foundation of evidence upon which to base treatment decisions concerning patients with this spectrum of abnormalities. This preliminary work laid the foundation for a grant application which was submitted to the Children’s Heart Foundation to fund a CHSS study of AAOCA. The Principle Investigator is Dr. Julie Brothers, cardiologist at the Children’s Hospital of Philadelphia. Co-investigators include Dr. Brothers’ colleagues in Philadelphia as well as CHSS member physicians from the Research Committee and the Data Center. Dr. Brothers and her colleagues at CHOP have graciously agreed to apply the funds awarded in this grant to support data management and analysis for this project at the CHSS Data Center.
We are in the process of establishing a multi-institutional registry at the CHSS of children and young adults with anomalous aortic origin of a coronary artery with interarterial or intraconal or intramural course (AAOCA). Our overall purpose is to develop and maintain an ongoing comprehensive multi-institutional registry comprised of clinical information about subjects who have been evaluated and/or followed at any of the participating CHSS institutions. We hope to ultimately define the natural and “unnatural” history of this congenital coronary anomaly and to develop evidence-based treatment and management guidelines. Specific inclusion criteria will be provided in the near future, but basically we will focus on children and young adults (up to age 30) who have been diagnosed with AAOCA and managed at your institution in the past decade, as well as new patients, going forward. We are in the process of preparing IRB guidelines and a template IRB application appropriate to this type of registry investigation.
We encourage you to discuss this project with colleagues at your institution. This obviously will be a multi-disciplinary effort, with cardiologists and advanced practice nurses playing important roles. We hope that all CHSS member institutions will want to participate. Feel free to contact Dr Julie Brothers (the Principal Investigator) who can advise you on how to proceed with getting participation organized at your institution. Dr Brothers can be contacted via phone at 267-426-5797 or email at brothersj@email.chop.edu.
Please contact Dr. Brothers or myself with any questions you have about the AAOCA registry. We thank you once again for your help with this important research project.
Sincerely,
Marshall L. Jacobs M.D.
Chair, CHSS Research Committee
marshall.jacobs@comcast.net