Author + information
- Received August 2, 2005
- Accepted August 10, 2005
- Published online February 21, 2006.
- 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¶¶
- ↵⁎Reprint requests and correspondence:
Dr. Gail D. Pearson, NHLBI, 6701 Rockledge Drive, Room 9202, Bethesda, Maryland 20892.
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.
The National Heart, Lung, and Blood Institute and the National Institutes of Health Office of Rare Diseases financially supported the Working Group meeting held in Bethesda in September 2004 that stimulated the preparation of this paper.
- Received August 2, 2005.
- Accepted August 10, 2005.
- American College of Cardiology Foundation