just like you
If you experience problems completing the survey online,
please complete the paper version.
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.
The project is called CH STRONG, which stands for Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG. We’ve asked thousands of people across the United States to take our survey, and we hope you’ll consider participating.
Your participation in this survey will provide us with a more complete understanding of the challenges faced by adults with CHD. Your answers will give us the insight we need to help people living with CHD live longer, more fulfilling lives. We want to hear from you, even if you’re not currently receiving care for your CHD.
To take our survey, click here, and add your voice to the thousands of stories we’re collecting to help improve the lives of people like you.
If you experience problems completing the survey online, please complete the paper version. Please contact us if you need another copy of the paper survey.
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.
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 the March of Dimes Foundation.
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
The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. Originally founded to combat polio, the March of Dimes turned its focus to preventing birth defects and infant mortality. The March of Dimes has led the way to discover the genetic causes of birth defects, to promote newborn screening, and to educate medical professionals and the public about best practices for healthy pregnancy. The March of Dimes has supported research for surfactant therapy to treat respiratory distress and helped initiate the system of regional neonatal intensive care for premature and sick babies. The March of Dimes Folic Acid Campaign helped achieve dramatic reduction in the incidence of neural tube defects, birth defects of the brain and spine. Since 2003, the March of Dimes has responded to the rising incidence of premature birth by initiating an intensive, multi-year campaign to raise awareness and find the causes of prematurity.
The March of Dimes also provides mothers, fathers, and families with information about pregnancy and newborn health issues, including information on congenital heart defects.
For more information: http://www.marchofdimes.org
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.
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
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.
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: firstname.lastname@example.org
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
Dr. Sherry Farr is a senior epidemiologist in the National Center on Birth Defects and Developmental Disabilities at CDC. Dr. Farr began her career at CDC 12 years ago as an Epidemic Intelligence Service Officer in the Division of Reproductive Health. Dr. Farr has published over 60 peer-reviewed papers on causes of disease and effects of interventions and policies on the health of women and children. She focuses her current work on the epidemiology of congenital heart defects across the lifespan. Dr. Farr’s previous work focused on women’s mental health and substance use, chronic diseases among women of reproductive age, assisted reproductive technology, and mother-to-child transmission of HIV. Dr. Farr has mentored research fellows, Master's degree students, and medical residents. Dr. Farr received her Master’s degree and PhD in Epidemiology from the University of North Carolina at Chapel Hill.
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
Scott Klewer, MD, will serve as Principal Investigator, Arizona. Dr. Klewer is a Pediatric Cardiologist with 19 years of clinical experience in CHD. He is Chief of UA Pediatric Cardiology, holds the Sarver Heart Center Endowed Chair for Congenital Heart Disease in Adults, and serves as a member of the Adult Congenital Heart Association National Medical Advisory Board. He has directed an extramurally supported molecular developmental heart research laboratory and created and directs the Adolescent and Adult Congenital Cardiology Program in southern Arizona, providing comprehensive services for the population of adults living with congenital heart conditions. Dr. Klewer is well-positioned to lead this team and will take the lead on collaboration with the March of Dimes and CDC.
Senior Vice President and Chief Medical Officer of the March of Dimes
Distinguished Professor Emeritus, Department of Pediatrics, UCLA
Professor Adjunct of Pediatrics, Yale University School of Medicine
Project Officer, March of Dimes CH STRONG More
Dr. McCabe is an internationally recognized expert in pediatrics and genetics and has advanced the work of the March of Dimes mission to continue the life-saving work in the prevention of birth defects, premature birth, and infant mortality. As a volunteer, he served as Chair of the March of Dimes Basil O’Connor Award Committee. The award helps early-career scientists whose research aligns with the March of Dimes mission. Dr. McCabe provided clinical care to patients with birth defects from 1976 until he arrived at the March of Dimes in 2012. He had particular clinical and research interests in newborn screening, inborn errors of metabolism, and Down syndrome, including congenital cardiovascular disorders among patients with Down syndrome. He was the inaugural Mattel Executive Endowed Chair of the University of California Los Angeles, Department of Pediatrics and the inaugural Physician-in-Chief of the Mattel Children’s Hospital. In those roles he was active in teaching residents and fellows about a broad range of topics in pediatrics, including the presentation and course of infants and children with congenital heart disease. He is an elected Member of the National Academy of Medicine and a Fellow of the American Association for the Advancement of Science.
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
Dr. Nembhard is an Associate Professor of Epidemiology, Section Chief of Birth Defects Research in the UAMS Department of Pediatrics, and the Scientific Director of ARHMS. She has formal training in survey methodology, sampling, and data linkage through her doctoral training in epidemiology. She will provide expertise in birth defects surveillance; epidemiological methodology in population-based data collection, including survey methodology, evaluation, and performance monitoring; and preparation of the written assessment of accomplishments, challenges, and opportunities in collaboration with program investigators, CDC, and awardees. Dr. Nembhard has experience in population-based data collection, including mail-outs, survey administration via paper and computer-assisted telephone interviews (CATI) by participation in BD-STEPS, NBDPS, the National Children’s Study (NCS), Metro-Atlanta Heart Disease Study, and pregnancy cohort studies.
Professor in the Department of Pediatrics and Psychiatry
University of Arkansas for Medical Sciences (UAMS)
Associate Director of the Center for Applied Research and Evaluation (CARE) in the Department of Pediatrics
Co-Principal Investigator, Arkansas CH STRONG More
Dr. Robbins is a Professor in the UAMS Departments of Pediatrics and Psychiatry and Associate Director of the Center for Applied Research and Evaluation at Arkansas Children’s Hospital. He has formal training in survey sampling, design, and administration through his doctoral training in sociology. He has designed multiple surveys, including those administered by mail, in person, and online. Dr. Robbins is trained as a medical sociologist and has interests in the hospital care of infants with birth defects, social and racial disparities in infant mortality, safety and effectiveness of hospital care of children, and outcomes of mental health care for adolescents. Dr. Robbins has completed projects demonstrating reduced rates of some folate-preventable birth defects in addition to neural tube defects following fortification of grains with folic acid in 1998, fetal alcohol exposure among newborns over the past 10 years, and co-occurring birth defects among newborns with lethal chromosomal anomalies
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.
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.