Medical College Researchers Participate in National Study of Adult Survivors of Congenital Heart Disease
June 8 - Medical College of Wisconsin researchers are enrolling adults with congenital heart disease in a national research study. They are inviting patients who are referred to the Adult Congenital Heart Disease Program.
Children’s Hospital of Wisconsin, in conjunction with Froedtert Hospital and the Medical College, runs one of the few adult congenital heart disease programs in the country to treat the increasing number of people born with heart conditions who are living into adulthood.
Study goals are to assess lapses in, and barriers to, specialty care for these patients, and to evaluate the impact of educational efforts on their understanding of the disease and willingness to participate in future studies.
Michael Earing, MD, director of the ACHD Program, is leading the local arm of the study. His academic appointments are in the divisions of adult cardiovascular medicine and pediatric cardiology.
Historically, few children with congenital heart disease lived beyond childhood, according to Dr. Earing. “Now, over 85 percent survive to adulthood, and they are one of the nation’s largest adult populations living with a new chronic disease that began in childhood. These patients may think they’re fine, but unforeseen long-term complications in this population can and do occur.
Study volunteers will be asked to fill out an educational questionnaire on the disease and their care history at the first clinic visit. A second questionnaire will be sent to them three months afterward.
The two-year study is funded by the National Institutes of Health’s Partners in Research Program, in partnership with the Alliance for Adult Research in Congenital Cardiology and the Adult Congenital Heart Association, founded in 1998 by a group of ACHD survivors and their families. It seeks to enroll a total of 1,200 participants from ten centers nationwide.
Other participating centers with ACHD programs include: Oregon Health Sciences University, University of Washington Medical Center, Children’s Hospital Boston, Hospital of the University of Pennsylvania, University of Colorado Medical Center, Columbia University Medical Center, Children’s National Medical Center in Washington, DC; Penn State University Medical Center, Children’s Hospital of Columbus, Ohio, and University of California at Los Angeles Medical Center.
For more information on the study, call (414) 266-4757