Meet the CHSTRONG KIDS Team

The Minnesota site for CHSTRONG KIDS is a joint effort between the Birth Defects and Critical Congenital Heart Defects Longitudinal Follow-up programs in the Children & Youth with Special Health Needs (CYSHN) section of the Minnesota Department of Health. The CYSHN enhances positive outcomes for children and youth with special health needs and their families through education, follow-up, community partnerships, public policy, and surveillance.

The primary goals of the Minnesota Birth Defects program are to monitor trends of birth defects to detect emerging health concerns, identify affected populations, and assure appropriate services are provided to families. The Birth Defects Information System was authorized in 2004 and began population-based surveillance using active case-finding in mid-2005, expanding statewide by 2013. The program promotes awareness and research on risk factors, treatment, and prevention of and cures for birth defects, including 17 congenital cardiac conditions.

Critical Congenital Heart Defects (CCHD) Long-term Follow-up was authorized in 2013 to build off early medical and developmental intervention services for children and their families identified with a CCHD. The program consults with partners, including cardiologists, other healthcare professionals, and community organizations that support children and adolescents with a CCHD and their families. They have helped identify needs of Minnesota CCHD families to develop financial, family support, educational, and advocacy resources.

Principal Investigators for Minnesota

Sook Ja Cho, MPH, PhD
Birth Defects Monitoring and Analysis Unit
Children and Youth with Special Health Needs, Child & Family Health
Minnesota Department of Health
Principal Investigator, Minnesota CHSTRONG KIDS

Sook Ja Cho is the principal epidemiologist working for the Birth Defects Monitoring and Analysis Unit at the Minnesota Department of Health (MDH). She has served as a principal investigator for federal grants (non-research), including CHSTRONG KIDS, in Minnesota since she joined the MDH in 2013. She is an expert in population-based birth defects surveillance systems and a member of the National Birth Defects Prevention Network. She participates as a co-author of manuscripts from multistate birth defects surveillance data pooled projects. She received her Master of Public Health from the Seoul National University in Korea and a doctorate from the University of Minnesota School of Public Health.

Heather Pint, RN, PHN
Longitudinal Follow-up for Newborn Screening Conditions
Children and Youth with Special Health Needs, Child & Family Health
Co-Principal Investigator, Minnesota CHSTRONG KIDS

Heather Pint is the Critical Congenital Heart Disease (CCHD) Longitudinal Follow-up public health nurse at the Minnesota Department of Health (MDH). She has worked at the MDH for fourteen years; 6 years in the Vaccines for Children program and 8 years in the Children and Youth with Special Health Needs section. She has nursing experience in obstetrics, home care, and public health at both the county and state level. In her current role, she works with both the Newborn Screening and Birth Defects programs and their stakeholders to improve the systems that serve children with a CCHD and their families. She earned her Bachelor of Science in Nursing from the University of Minnesota.

The Massachusetts site for CHSTRONG KIDS is a partnership between the Department of Epidemiology at Boston University School of Public Health and the Division for Surveillance, Research, and Promotion of Perinatal Health at the Massachusetts Department of Public Health. The partnership brings experience in collecting data from families of children with birth defects, expertise in engaging communities of persons with disabilities, and expertise in identifying and monitoring congenital anomalies through state-wide registries.

The Division for Surveillance, Research, and Promotion of Perinatal Health at the Massachusetts Department of Public Health houses the Massachusetts Birth Defects Monitoring Program (MBDMP), which supports birth defects monitoring and research, and sharing information aimed at preventing birth defects. MBDMP collects information on all newly diagnosed cases of birth defects among Massachusetts residents to detect the prevalence of birth defects, track trends, investigate potential causes, plan appropriate interventions, and ensure services and appropriate care for children with special health needs.

Principal Investigators for Massachusetts

Martha M. Werler, DSc, MPH
Professor, Epidemiology
Boston University School of Public Health
Co-Principal Investigator, Massachusetts CHSTRONG KIDS

Martha Werler is a perinatal epidemiologist at Boston University School of Public Health, where she has been conducting studies of congenital anomalies for more than 35 years. Her research has been aimed at identifying factors to prevent the occurrence of birth defects and to promote health and well-being among persons with congenital anomalies. She has published more than 200 papers on these topics, including her study that showed folic acid use immediately before and after conception reduces the risk of spina bifida. In addition to her research, Martha teaches epidemiology methods to both master’s and doctoral students and serves as director of the Boston University PhD program in epidemiology. She received her Master of Public Health from the University of Michigan and her Doctor of Science from Boston University.

Eric Rubenstein PhD, ScM
Assistant Professor, Epidemiology
Boston University School of Public Health
Co-Principal Investigator, Massachusetts CHSTRONG KIDS

Eric Rubenstein, PhD, ScM, is an assistant professor in the department of epidemiology at Boston University. He received his PhD from the University of North Carolina Gillings Schools of Public Health and his Master of Science from the Johns Hopkins Bloomberg School of Public Health. His research focuses on improving health and well-being in populations with intellectual and developmental disabilities and other disabilities across the life course. Dr. Rubenstein’s research is motivated and continually inspired by his friends, Special Olympic athletes, and fellow advocates in the disability community.

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) is the Georgia site for CHSTRONG KIDS. NCBDDD strives to advance the health and well-being of our nation’s most vulnerable populations, including people living with heart defects. For CHSTRONG KIDS, NCBDDD will identify children with heart defects using information from the Metropolitan Atlanta Congenital Defects Program (MACDP).

Metropolitan Atlanta Congenital Defects Program (MACDP)

MACDP 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 continual medical record review and other sources of information.

Principal Investigator for Georgia

Karrie Downing, MPH
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention, Atlanta, Georgia
Project Officer, CHSTRONG KIDS
Principal Investigator, Metropolitan Atlanta CHSTRONG KIDS

Karrie Downing is an epidemiologist in the National Center on Birth Defects and Developmental Disabilities at CDC. She began her career at CDC in 2015 and has published more than 20 peer-reviewed papers on outcomes of individuals living with congenital heart defects. She served as the project coordinator for the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CHSTRONG), a project that surveyed adults living with heart defects from 2015–2019. She focuses her work on the epidemiology of congenital heart defects across the lifespan. Karrie Downing has mentored research fellows and master’s degree students. She received her Master of Public Health in Epidemiology from Rollins School of Public Health at Emory University in Atlanta.