Clinical research priorities in adult congenital heart disease

• Type of Material: Article
• Authors: Timothy Cotts, University of Michigan; Paul Khairy, University of Montreal; Alexander R. Opotowsky, Harvard University; Anitha S. John, Children’s National Medical Center; Anne Marie Valente, Harvard University; Ali N. Zaidi, Ohio State University; Stephen C. Cook, Children’s Hospital of Pittsburgh; Jamil Aboulhosn, University of California, Los Angeles; Jennifer Grando Ting, Pennsylvania State University; Michelle Gurvitz, Harvard University; Michael J. Landzberg, Harvard University; Amy Verstappen, Adult Congenital Heart Association; Joseph Kay, University of Colorado Denver; Michael Earing, Medical College of Wisconsin; Wayne Franklin, Texas Children’s Hospital; Brian Kogon, Emory University; Craig S. Broberg, Oregon Health and Science University
• Language: English
• Date: 2014-02-15
• Publisher: Elsevier: 12 months
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2013 Elsevier Ireland Ltd. All rights reserved.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.ijcard.2013.12.034
• Title of Journal or Parent Work: International Journal of Cardiology
• ISSN: 0167-5273
• Volume: 171
• Issue: 3
• Start Page: 351
• End Page: 360
• Grant/Funding Information: Dr. Aboulhosn receives grant support from Actelion Pharmaceuticals.
• Keywords: Science & Technology; TIME 3-DIMENSIONAL ECHOCARDIOGRAPHY; Fontan procedure; PROTEIN-LOSING ENTEROPATHY; Tetralogy of Fallot; SUDDEN CARDIAC DEATH; MAGNETIC-RESONANCE; Life Sciences & Biomedicine; Transposition of the great arteries; SURGICALLY REPAIRED TETRALOGY; IMPLANTABLE CARDIOVERTER-DEFIBRILLATORS; Cardiac & Cardiovascular Systems; LONG-TERM SURVIVORS; Cardiovascular System & Cardiology; GREAT-ARTERIES; SYSTEMIC RIGHT VENTRICLE; PULMONARY VALVE-REPLACEMENT; Survey; Congenital heart disease
• Research Categories: Health Sciences, Medicine and Surgery

Abstract

Background: Adult congenital heart disease (ACHD) clinicians are hampered by the paucity of data to inform clinical decision-making. The objective of this study was to identify priorities for clinical research in ACHD. Methods: A list of 45 research questions was developed by the Alliance for Adult Research in Congenital Cardiology (AARCC), compiled into a survey, and administered to ACHD providers. Patient input was sought via the Adult Congenital Heart Association at community meetings and online forums. The 25 top questions were sent to ACHD providers worldwide via an online survey. Each question was ranked based on perceived priority and weighted based on time spent in ACHD care. The top 10 topics identified are presented and discussed. Results: The final online survey yielded 139 responses. Top priority questions related to tetralogy of Fallot (timing of pulmonary valve replacement and criteria for primary prevention ICDs), patients with systemic right ventricles (determining the optimal echocardiographic techniques for measuring right ventricular function, and indications for tricuspid valve replacement and primary prevention ICDs), and single ventricle/Fontan patients (role of pulmonary vasodilators, optimal anticoagulation, medical therapy for preservation of ventricular function, treatment for protein losing enteropathy). In addition, establishing criteria to refer ACHD patients for cardiac transplantation was deemed a priority. Conclusions: The ACHD field is in need of prospective research to address fundamental clinical questions. It is hoped that this methodical consultation process will inform researchers and funding organizations about clinical research topics deemed to be of high priority.