Help us
help people
just like you
Each year, about 1 in 110 people are born with a congenital heart defect (CHD). Five teams of researchers are working together to gather information to help improve the lives of people living with CHD – people like you.
Thank you to everyone who participated in CH STRONG, the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG. Over 1,600 individuals born with heart defects in Arizona, Arkansas, and Georgia participated in CH STRONG.
The information provided will help us identify important issues for adults with heart defects, such as health care use, quality of life, and social and educational outcomes. Adults with heart defects, parents of children with heart defects, and healthcare providers will benefit from CH STRONG findings.
About CH STRONG
CH STRONG stands for Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG. CH STRONG is a project to gather information about care and quality of life from adults living with CHD. The answers to these questions will help thousands of adults and children with CHD and their families receive better care and plan for their future.
Partnerships
CH STRONG is a collaboration between five organizations: the University of Arizona College of Medicine, the Arkansas Center for Birth Defects Research and Prevention, the Metropolitan Atlanta Congenital Defects Program, the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, and March of Dimes.
About the Centers for Disease Control and Prevention
The mission of the CDC’s National Center on Birth Defects and Developmental Disabilities is to promote the health of babies, children, and adults and enhance the potential for full, productive living. To achieve its mission, the Center works to identify the causes of birth defects and developmental disabilities; help children to develop and reach their full potential; and promote health and well-being among people of all ages with disabilities, including blood disorders. The Center seeks to accomplish these goals through research, partnerships, and prevention and education programs.
For more information: https://www.cdc.gov/ncbddd
About March of Dimes
March of Dimes leads the fight for the health of all moms and babies. March of Dimes supports research, leads programs and provides education and advocacy so that every baby can have the best possible start. Building on a successful 80-year legacy of impact and innovation, the March of Dimes empower every mom and every family. Visit marchofdimes.org or nacersano.org for more information. Visit shareyourstory.org for comfort and support. Find the March of Dimes on Facebook and follow them on Instagram and Twitter.
About Participating Sites
University of Arizona College of Medicine, Department of Pediatrics
The University of Arizona (UA) Health Sciences is the statewide leader in biomedical research and health professions training. The UA Health Sciences includes the UA Colleges of Medicine, Nursing, Pharmacy, and Mel and Enid Zuckerman College of Public Health, with main campus locations in Tucson and the growing Phoenix Biomedical Campus in downtown Phoenix. The UA Health Sciences reaches across the state of Arizona and the greater Southwest to provide cutting-edge health education, research, patient care, and community outreach services.
The UA Steele Children’s Research Center in the Department of Pediatrics is one of the prestigious Centers of Excellence at the UA College of Medicine – Tucson at the University of Arizona Health Sciences. It is the state’s only academic pediatric research center and the only facility in Southern Arizona where researchers and physician-scientists are dedicated to advancing medical knowledge through basic and translational research to improve children’s health. As researchers, they seek to discover answers to children’s medical mysteries. As physician-scientists, they provide compassionate care to hospitalized patients and pediatric outpatient clinics throughout Tucson and the state.
Together, staff in the Department of Pediatrics and the Arizona Birth Defects Monitoring Program (ABDMP) have collaborated for over 17 years on numerous projects involving birth defects surveillance and research. The AZ CH STRONG team is working closely with the ABDMP to identify and reach people eligible to respond to our survey.
Arkansas Center for Birth Defects Research and Prevention
The Arkansas Center for Birth Defects Research and Prevention at Arkansas Children’s Hospital Research Institute and the University of Arkansas for Medical Sciences has a mission to reduce the prevalence of birth defects in Arkansas and the nation, as well as to decrease the psychological, social, and economic impact of birth defects. To accomplish these goals, data are obtained through the Arkansas Reproductive Health Monitoring System (ARHMS) – a nationally acclaimed birth defects surveillance system. The Arkansas Center participated in the National Birth Defect Prevention Study (NBDPS), participates in the ongoing Birth Defects Study to Evaluate Pregnancy exposureS (BD-STEPS), conducts local research studies, and collaborates with researchers and public health experts across the country to develop public health programs to help prevent birth defects. Through synergistic collaborations for more than 18 years, like this collaboration on CH STRONG, the Arkansas Center for Birth Defects Research and Prevention combines surveillance, research, and prevention to make a difference in the lives of children and their families.
For more information visit:
Arkansas Center for Birth Defects Research and Prevention or the University of Arkansas for Medical Sciences Department of Pediatrics
Metropolitan Atlanta Congenital Defects Program (MACDP)
The Metropolitan Atlanta Congenital Defects Program is a population-based tracking system for birth defects. MACDP was established in 1967 by the CDC, Emory University, and the Georgia Mental Health Institute. It was the nation’s first population-based system for active collection of information about birth defects. Population-based means that the researchers look at all babies with birth defects who live in the study region to get a complete picture of what is happening within the population. Since 1967, the program has tracked birth defects among infants and children born to mothers living in metropolitan Atlanta using active case-finding methods and multiple sources of information.
Contact Us
If you have questions or want more information, click on the state graphic above that represents the state where your mother lived when you were born. An email will be sent to the related participating site and site staff members will respond to you.
If you’re not sure who to contact or if you have questions about the project overall, contact: info@chstrong.org
Meet our Team
Sherry Farr, MSPH, PhD
National Center on Birth Defects and Development Disabilities
Center for Disease Control and Prevention, Atlanta, Georgia
Project Officer, CH STRONG
Principal Investigator, Metropolitan Atlanta CH STRONG more…
Scott Klewer, MD
Division Chief, Pediatrics’ Division of Cardiology, University of Arizona, Tucson
Member, UA Steele Children’s Research Center
Peggy M. Barrett Endowed Chair for Congenital Heart Disease in Adults at the UA Sarver Heart Center
Principal Investigator, Arizona CH STRONG more…
Wendy N. Nembhard, MPH, PhD
Section Chief, Birth Defects Research, Department of Pediatrics
College of Medicine at the University of Arkansas for Medical Sciences (UAMS)
Scientific Director for the Arkansas Reproductive Health Monitoring Systems
Co-Principal Investigator, Arkansas CH STRONG more…
Lisa F. Waddell, MD, MPH
Senior Vice President for Maternal Child Health and NICU Innovation
Deputy Medical Officer, March of Dimes
Project Officer, March of Dimes CH STRONG more…
Living with CHD
As medical advancements and treatments have improved the lives of those living with CHD, many people are living longer and healthier lives well into adulthood. Today, continuous and proper medical care is helping adults living with CHD live healthy and productive lives. Here are some links that may help.
The Adult Congenital Heart Association (ACHA) has developed a series of Fact Sheets on specific congenital heart defects. Each fact sheet offers a description of the defect and describes the impact it may have on adult health.
ACHA provides the following guidance to adults with congenital heart defects:
“The American College of Cardiology and the American Heart Association made guidelines for taking care of adult patients with congenital heart defects. Based on these guidelines, if you were told you had a congenital heart defect as a child, you should have your heart checked at least once at a special adult congenital heart disease (ACHD) center. This center can make sure that your heart is OK and any repairs you had are still working. If you were born with a more complex CHD, you should visit an ACHD center at least every two years, even if you had surgery for your heart.”
ACHA has summarized the Guidelines for the Management of Adults with Congenital Heart Disease in an easy-to-read one-page document of Highlights for Patients and Families.
To find an adult CHD provider or clinic, click here to search ACHA’s Clinic Directory.
CHD Organizations
The Congenital Heart Public Health Consortium and the Adult Congenital Heath Association are organizations founded to support those living with CHD by offering educational resources and advocating for policies and practices that impact their lives.
Congenital Heart Public Health Consortium, a health initiative of the Academy of Pediatrics, offers information and resources to people living with CHD and utilizes public health principles to affect change for those whose lives are impacted by CHD. The Consortium achieves its mission by providing a unified voice for public health priorities, by expanding opportunities for surveillance and public health research, and by informing public policy priorities.
Adult Congenital Heart Association (ACHA) is an organization begun by individuals and families living with congenital heart disease and is dedicated to advancing the support, care, and treatment available. ACHA achieves this mission through patient and provider educational offerings, through advocacy efforts, and by supporting research.
The CDC has developed a comprehensive list of organizations working on issues related to congenital heart defects. These organizations may work on a wide array of health care issues throughout the lifespan such as the identification of babies born with CHD, support for families with children with CHD, or health care advocacy for adults living with CHD.