TY - JOUR
T1 - Clinical research priorities in adult congenital heart disease
AU - Cotts, Timothy
AU - Khairy, Paul
AU - Opotowsky, Alexander R.
AU - John, Anitha S.
AU - Valente, Anne Marie
AU - Zaidi, Ali N.
AU - Cook, Stephen C.
AU - Aboulhosn, Jamil
AU - Ting, Jennifer Grando
AU - Gurvitz, Michelle
AU - Landzberg, Michael J.
AU - Verstappen, Amy
AU - Kay, Joseph
AU - Earing, Michael
AU - Franklin, Wayne
AU - Kogon, Brian
AU - Broberg, Craig S.
N1 - Funding Information:
This project was sponsored by a grant from the National Heart, Lung and Blood Institute ( RC4 HL104831 ) via the American Recovery and Reinvestment Act of 2009. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Heart, Lung and Blood Institute of the National Institutes of Health .
PY - 2014/2/15
Y1 - 2014/2/15
N2 - 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.
AB - 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.
KW - Congenital heart disease
KW - Fontan procedure
KW - Survey
KW - Tetralogy of Fallot
KW - Transposition of the great arteries
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U2 - 10.1016/j.ijcard.2013.12.034
DO - 10.1016/j.ijcard.2013.12.034
M3 - Article
C2 - 24411207
AN - SCOPUS:84893667373
SN - 0167-5273
VL - 171
SP - 351
EP - 360
JO - International Journal of Cardiology
JF - International Journal of Cardiology
IS - 3
ER -