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OHSU in Nationwide Congenital Heart Disease Study

Focus of the NIH-sponsored study is on lapses in specialized care for those with adult congenital heart disease who think they’re fine but may be flirting with disastrous health complications – a growing public health concern 

Oregon Health & Science University and 10 other academic medical centers have initiated a research study, funded by the National Institutes of Health, to determine reasons for gaps in the specialized care for patients with congenital heart disease (CHD), identify the barriers to such care, and assess the impact of targeted educational interventions.

The two-year study, called the Health Education and Access Research Trial in Adult Congenital Heart Disease, or HEART-ACHD, is being funded through the NIH Partners in Research Program, and will be conducted in partnership with the Alliance for Adult Research in Congenital Cardiology (AARCC).

The study is a milestone because it represents a new collaborative effort between the nascent AARCC research group and the patient-run Adult Congenital Heart Association (ACHA), meaning both physicians and patients have an input into the study.The study also is noteworthy because NIH-funded research targeting adults with congenital heart defects is rare.

“We are really excited about this door opening,” said Craig Broberg, M.D., director of the OHSU Adult Congenital Heart Disease Program and founding member of AARCC. “There are bound to be many more such studies ahead that will have a real impact on our patients, and to which we will be proud contributors.”  

More than 85 percent of the children born with CHD now survive to adulthood thanks to advances in pediatric cardiology care. Because of this, the number of adults in the United States with moderate or severe heart defects is now estimated to total about 1 million, exceeding the number of affected children.

That extraordinary success story is marred, however, by a serious and growing public health concern. Studies show that many CHD adults do not receive the specialized care they need, which can lead to serious and sometimes fatal health complications.This study will attempt to understand some of the obstacles that prevent patients from receiving ongoing care for their heart defects as adults.  

“Kids that have been born with congenital heart defects are routinely and successfully cared for surgically with astounding success,” said Broberg.“At that point they’re often well on their way to a healthy life. But, in truth, their hearts are never really normal.Many of these patients are now adults, and need to recognize the need for ongoing vigilance about their heart condition.It’s becoming increasingly apparent that, as a nation, we need to get the word out that people with congenital heart disease need informed follow-up care.”

The study will recruit from new patients seen at the Adult Congenital Heart Disease Clinic at OHSU and at 10 other academic health centers in the United States: the University of Washington Medical Center, Children’s Hospital Boston, Hospital of the University of Pennsylvania, University of Colorado Medical Center, Columbia University Medical Center, Medical College of Wisconsin, Children’s National Medical Center (Washington, D.C.), Penn State University Medical Center, Nationwide Children’s Hospital (Columbus, Ohio), and the University of California at Los Angeles Medical Center.

About OHSU

Oregon Health & Science University is the state’s only health and research university, and Oregon’s only academic health center. OHSU is Portland's largest employer and the fourth largest in Oregon (excluding government), with 12,400 employees. OHSU's size contributes to its ability to provide many services and community support activities not found anywhere else in the state. It serves patients from every corner of the state, and is a conduit for learning for more than 3,400 students and trainees. OHSU is the source of more than 200 community outreach programs that bring health and education services to every county in the state.

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