Category Archives: Uncategorized

Access to Care: Are We Ready for the Surge in CHD Survivors?

The CHPHC factsheet regarding access to care for congenital heart defect (CHD) survivors. CHD represents a medical challenge that spans the life of a patient from birth through adulthood. With increased survival, the number of adults with CHD grows annually … Continue reading

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October—Pregnancy and Infant Loss Awareness Month

Through the Congenital Heart Public Health Consortium (CHPHC) we celebrate that most infants born with a CHD will live to be adults. At the same time, congenital heart defects (CHDs) remain a leading cause of birth defect-associated infant illness and … Continue reading

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Get a flu shot to help reduce risk of birth defects, March of Dimes says

Pregnant women and those planning a pregnancy should protect their own health and that of their baby by getting their annual flu shots right away, the March of Dimes says. The March of Dimes notes that getting get sick with … Continue reading

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WITH DATA IS ESSENTIAL TO UNDERSTANDING CONGENITAL HEART DISEASE

DIGGING DEEPER Congenital heart disease (CHD) is the #1 birth defect, affecting 40,000 births a year in the United States alone. It is estimated that  about 2.4 million people of all ages were living with CHD in the United States in 2010. This growing population requires lifelong  specialized care to improve outcomes and reduce healthcare costs.   In the era of “big data,” numerous data sources are available and could be used to evaluate health outcomes, establish standards of  care, and identify opportunities to advance care.   However, the inability to meaningfully and reliably connect data sources is a major barrier  to effective use of data, with significant consequences:   Inability to appropriately counsel patients based on the scarcity of individual and  population‐based longitudinal outcomes data.  This includes barriers to integration of  data from multiple sources, leading to a lack of understanding of disease progression   Difficulty evaluating healthcare needs, access, and costs across the lifespan   Excessive burden on healthcare institutions committed to contributing data    Some challenges to linking data sets include:   Challenges in negotiating data use agreements may preclude linkages    Datasets may use differing data collection and reporting mechanisms    Submitting data to multiple databases places burdens on healthcare institutions and  providers   Increased costs may prevent the use of existing data     These actionable activities can considerably improve data usage:   Collecting/following data from a single patient over time in a way that addresses  privacy and consent issues    Standardizing minimum data set requirements and reporting mechanisms   Minimizing the burden of redundant data collection    Increasing awareness among patients and families about the importance of data use  and data sharing    … Continue reading

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Adult Congenital Heart Association Announces Adult Congenital Heart Disease (ACHD) Accredited Comprehensive Care Centers

Over the past several years, the Adult Congenital Heart Association (ACHA) worked collaboratively to define and vet the criteria for accreditation and create a rigorous accreditation process. ACHA anticipates that accreditation will elevate the standard of care for the CHD … Continue reading

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CHD According to Me: Life Lessons from Family Members Living with CHD

In their own words family members offer their perspective on living with a congenital heart defect (CHD). Read perspectives from a mom regarding parenting a child with CHD, a dad regarding the desire to “fix” CHD, and a sibling reinforcing … Continue reading

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Congeital Heart Disease Symposium

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Summer Travel Tips from the Adult Congenital Heart Association

There are so many things to do when preparing for a trip, but add a congenital heart defect (CHD) to the equation and the to-do list grows. To help alleviate some of this stress, the Adult Congenital Heart Association (ACHA) … Continue reading

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Congenital Heart Disease Clinic and Provider Directory

The congenital heart disease (CHD) clinic directory is an online directory on American College of Cardiology’s (ACC) CardioSmart Website. The directory is designed to help patients, families and providers find specialty CHD care. With nearly 200 CHD centers and practices … Continue reading

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Fewer than 50% of adolescents with heart problems are prepared for transition to adult care

The article “Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs” was published online by Congenital Heart Disease on Friday, May 19. The authors recognize the increased morbidity and … Continue reading

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