Clinical research priorities in adult congenital heart disease

Timothy Cotts, Paul Khairy, Alexander R. Opotowsky, Anitha S. John, Anne Marie Valente, Ali N. Zaidi, Stephen C. Cook, Jamil Aboulhosn, Jennifer Grando Ting, Michelle Gurvitz, Michael J. Landzberg, Amy Verstappen, Joseph Kay, Michael Earing, Wayne Franklin, Brian Kogon, Craig Broberg

    Research output: Contribution to journalArticle

    22 Citations (Scopus)

    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.

    Original languageEnglish (US)
    Pages (from-to)351-360
    Number of pages10
    JournalInternational Journal of Cardiology
    Volume171
    Issue number3
    DOIs
    StatePublished - Feb 15 2014

    Fingerprint

    Heart Diseases
    Research
    Primary Prevention
    Protein-Losing Enteropathies
    Pulmonary Valve
    Right Ventricular Function
    Tricuspid Valve
    Tetralogy of Fallot
    Ventricular Function
    Heart Transplantation
    Cardiology
    Vasodilator Agents
    Heart Ventricles
    Referral and Consultation
    Research Personnel
    Organizations
    Lung
    Therapeutics
    Surveys and Questionnaires

    Keywords

    • Congenital heart disease
    • Fontan procedure
    • Survey
    • Tetralogy of Fallot
    • Transposition of the great arteries

    ASJC Scopus subject areas

    • Cardiology and Cardiovascular Medicine

    Cite this

    Cotts, T., Khairy, P., Opotowsky, A. R., John, A. S., Valente, A. M., Zaidi, A. N., ... Broberg, C. (2014). Clinical research priorities in adult congenital heart disease. International Journal of Cardiology, 171(3), 351-360. https://doi.org/10.1016/j.ijcard.2013.12.034

    Clinical research priorities in adult congenital heart disease. / Cotts, Timothy; Khairy, Paul; Opotowsky, Alexander R.; John, Anitha S.; Valente, Anne Marie; Zaidi, Ali N.; Cook, Stephen C.; Aboulhosn, Jamil; Ting, Jennifer Grando; Gurvitz, Michelle; Landzberg, Michael J.; Verstappen, Amy; Kay, Joseph; Earing, Michael; Franklin, Wayne; Kogon, Brian; Broberg, Craig.

    In: International Journal of Cardiology, Vol. 171, No. 3, 15.02.2014, p. 351-360.

    Research output: Contribution to journalArticle

    Cotts, T, Khairy, P, Opotowsky, AR, John, AS, Valente, AM, Zaidi, AN, Cook, SC, Aboulhosn, J, Ting, JG, Gurvitz, M, Landzberg, MJ, Verstappen, A, Kay, J, Earing, M, Franklin, W, Kogon, B & Broberg, C 2014, 'Clinical research priorities in adult congenital heart disease', International Journal of Cardiology, vol. 171, no. 3, pp. 351-360. https://doi.org/10.1016/j.ijcard.2013.12.034
    Cotts T, Khairy P, Opotowsky AR, John AS, Valente AM, Zaidi AN et al. Clinical research priorities in adult congenital heart disease. International Journal of Cardiology. 2014 Feb 15;171(3):351-360. https://doi.org/10.1016/j.ijcard.2013.12.034
    Cotts, Timothy ; Khairy, Paul ; Opotowsky, Alexander R. ; John, Anitha S. ; Valente, Anne Marie ; Zaidi, Ali N. ; Cook, Stephen C. ; Aboulhosn, Jamil ; Ting, Jennifer Grando ; Gurvitz, Michelle ; Landzberg, Michael J. ; Verstappen, Amy ; Kay, Joseph ; Earing, Michael ; Franklin, Wayne ; Kogon, Brian ; Broberg, Craig. / Clinical research priorities in adult congenital heart disease. In: International Journal of Cardiology. 2014 ; Vol. 171, No. 3. pp. 351-360.
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    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.",
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    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

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    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.

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    KW - Congenital heart disease

    KW - Fontan procedure

    KW - Survey

    KW - Tetralogy of Fallot

    KW - Transposition of the great arteries

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