CDC Awards Next Round of CHD Surveillance Grants

At the Pediatric Congenital Heart Association, advocating for increased funding for data collection and public health research has always been a top priority.  Each year, our advocates call on Congress to give money to the CDC as part of the Congenital Heart Futures Act.  Shortly after this new law passed in 2010, the CDC awarded 3 four-year grants to work on CHD data collection in teens and adults. Thanks to the great efforts of our advocates, we are excited to see this work being expanded upon. This next round increases the number of grants from 3 to 5, and expands the work to look at children, too. Thank you to all of you have shared your voice to advocate for CHD across the lifespan!  Together – we are Conquering CHD!

Read more about it in this Capitol Hill Announcement:

 

Monday, September 21, 2015

CDC Announces New Cooperative Agreement Awards on Congenital Heart Defects

CDC’s National Center on Birth Defects and Developmental Disabilities is pleased to announce the five sites that have been funded to expand upon population-based tracking of adolescents and adults with congenital heart defects (CHDs). Emory University, Duke University, University of Colorado – Denver, New York State Department of Health, and the University of Utah will be awarded a total of $2.3 million for the first year of this four year project.

Emory University and New York State Department of Health were also funded from 2012-2015 and will build on their existing infrastructure for population-based tracking of CHDs to:

  • conduct longitudinal follow up of adolescents and adults identified with CHDs
  • identify factors associated with optimal healthcare and improved outcomes
  • evaluate factors that impede appropriate transition from pediatric to adult care
  • expand tracking activities to include the lifespan
  • develop pilot projects to translate public health best practices into action

Duke University, University of Colorado – Denver, and the University of Utah will develop and implement innovative approaches for conducting population-based tracking of CHDs focused on adolescents and adults, and potentially across the lifespan, by linking existing data sources. Tracking data will be used for descriptive epidemiology, to identify comorbidities, and examine healthcare utilization and referral to timely and appropriate services for adolescents and adults with CHDs.

Congenital Heart Defects

CHDs are one of the most prevalent birth defects in the United States affecting about one percent of all births and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs.  However, most current efforts to conduct population-based tracking of CHDs have focused on monitoring newborns, and little data exist on the prevalence and descriptive epidemiology of CHDs beyond early childhood in the United States.  Current estimates suggest there are over 2 million people living with a CHD in the United States.  Despite the public health burden, the lack of population-based tracking for CHDs among individuals of all ages in the United States means there are no reliable data on the actual prevalence, and the type and number of health services required to address the health needs of these individuals, costs of such health services, and longer term outcomes including comorbidities and survival of individuals living with CHDs. These awards will provide data to address such concerns, including transition from adolescent to adult care.

For more information about CHD, see CDC’s website: http://www.cdc.gov/heartdefects/

Save the Date: 2016 Legislative Conference

Save the Date

Mark your calendar!

The Adult Congenital Heart Association,
Children’s Heart Foundation,
and The Pediatric Congenital Heart Association
invite you to attend

Congenital Heart Legislative Conference 2016

February 1-2, 2016
Liaison Capitol Hill, Washington D.C.

Your voice matters as we unite to educate our members of Congress about congenital heart disease.

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

More information and online registration will be available this fall.