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STATE-OF-THE-ART PAPER

Report of the National Heart, Lung, and Blood Institute Working Group on Research in Adult Congenital Heart Disease

Roberta G. Williams, MD, FACC^_*, Gail D. Pearson, MD, ScD, FACC^,_*, Robyn J. Barst, MD, FACC, John S. Child, MD, FACC, Pedro del Nido, MD^||, Welton M. Gersony, MD, FACC, Karen S. Kuehl, MD, MPH, FACC^¶, Michael J. Landzberg, MD, FACC^#, Merle Myerson, MD, EdD, FACC^_**, Steven R. Neish, MD, SM, FACC, David J. Sahn, MD, MACC, Amy Verstappen, Carole A. Warnes, MD, FACC^|||| and Catherine L. Webb, MD, MS, FACC^¶¶

^_* Department of Pediatrics, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, California
Division of Heart and Vascular Diseases, National Heart, Lung, and Blood Institute, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland
Department of Pediatric Cardiology, Children's Hospital of New York, New York Presbyterian Columbia University, Columbia University College of Physicians and Surgeons, New York, New York
Ahmanson/University of California at Los Angeles Adult Congenital Heart Disease Center, David Geffen School of Medicine, University of California, Los Angeles, School of Medicine, Los Angeles, California
^|| Department of Surgery, The Children's Hospital, Harvard Medical School, Boston, Massachusetts
^¶ Division of Pediatric Cardiology, Children's National Medical Center, George Washington University, Washington, DC
^# Department of Cardiology, Brigham and Women's Hospital and The Children's Hospital, Harvard Medical School, Boston, Massachusetts
^_** Division of Epidemiology and Clinical Applications, National Heart, Lung, and Blood Institute, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland
Brown Foundation Heart Clinic, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas
Clinical Care Center for Congenital Heart Disease, Doernbecher Children's Hospital, Oregon Health and Science University, Portland, Oregon
Adult Congenital Heart Association, Philadelphia, Pennsylvania
^|||| Division of Cardiovascular Diseases and Pediatric Cardiology, Mayo Clinic College of Medicine, Rochester, Minnesota
^¶¶ Division of Pediatric Cardiology, Children's Memorial Hospital, Northwestern University Feinberg School of Medicine, Chicago, Illinois

Manuscript received August 2, 2005; accepted August 10, 2005.

^_* Reprint requests and correspondence: Dr. Gail D. Pearson, NHLBI, 6701 Rockledge Drive, Room 9202, Bethesda, Maryland 20892 (Email: pearsong{at}mail.nih.gov).

The Working Group on research in adult congenital heart disease (ACHD) was convened in September 2004 under the sponsorship of National Heart, Lung, and Blood Institute (NHLBI) and the Office of Rare Diseases, National Institutes of Health, Department of Health and Human Services, to make recommendations on research needs. The purpose of the Working Group was to advise the NHLBI on the current state of the science in ACHD and barriers to optimal clinical care, and to make specific recommendations for overcoming those barriers. The members of the Working Group were chosen to provide expert input on a broad range of research issues from both scientific and lay perspectives. The Working Group reviewed data on the epidemiology of ACHD, long-term outcomes of complex cardiovascular malformations, issues in assessing morphology and function with current imaging techniques, surgical and catheter-based interventions, management of related conditions including pregnancy and arrhythmias, quality of life, and informatics. After research and training barriers were discussed, the Working Group recommended outreach and educational programs for adults with congenital heart disease, a network of specialized adult congenital heart disease regional centers, technology development to support advances in imaging and modeling of abnormal structure and function, and a consensus on appropriate training for physicians to provide care for adults with congenital heart disease.

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