BDMA links - CYSHN

Birth Defects Resources

Birth Defects Monitoring and Analysis

National resources

Birth Defects Program at the Centers for Disease Control and Prevention
The Birth Defects Program at CDC exists to provide leadership and support for birth defects monitoring, analysis of birth defects data, research into causes, treatment and prevention of birth defects, education about birth defects and birth defects prevention.

March of Dimes: Working together for stronger, healthier babies
This website contains information and answers about pregnancy, your baby, folic acid, prematurity, genetic disorders, birth defects and much more. The Minnesota Chapter works to improve the health of babies and support families in Minnesota.

National Birth Defects Prevention Network (NBDPN)
The NBDPN is a volunteer–based organization that addresses the issues of birth defects surveillance, research and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. The site provides information about state birth defects programs and birth defects information and data from across the United States, including information on causes and prevention of birth defects. Educational materials are available to download.

National Birth Defects Prevention Study (NBDPS)
The National Birth Defects Prevention Study is the largest study in the U.S. researching the causes of birth defects. The study began in 1996 when Congress directed the CDC to establish the Centers for Birth Defects Research and Prevention in 10 states (AR, CA, GA, IA, MA, NJ, NY, NC, TX, and UT). Currently, the Study is in its wind–down phase and will be replaced by The National Birth Defects Case Control Study, which will use the knowledge gained from the NBDPS as its foundation. The website includes information about the study design, research approaches and findings from the NBDPS.

Organization of Teratology Information Specialists (OTIS) Resources – Mother To Baby
OTIS offers a series of fact sheets on “teratogens” (exposures that are known to interfere with fetal development). The fact sheets answer frequently asked questions about exposures during pregnancy.

PACER Center
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old. At PACER Center, parents will find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities.

Local resources

Family Voices of Minnesota is a grass roots family organization that aims to achieve family-centered care for all children, youth and young adults with special health care needs. Through state and national networks of families and providers, Family Voices of Minnesota provides tools that build partnerships among professionals, patients, and families, and serves as a trusted resource for information to improve health system policies.

Minnesota Hands & Voices provides information, support, and referral to families learning of their child's hearing loss. Parent Guides discuss your concerns with you and will send you information related to hearing loss and other topics of interest. They will also refer you to organizations and information sources, including other families of children with hearing loss, which you may find helpful.

Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) is the statewide organization serving as the leading voice and resource on Fetal Alcohol Spectrum Disorders (FASD) in Minnesota. MOFAS provides education and training so FASD is better understood and works to ensure that all women know there is no safe level of alcohol use during pregnancy. The MOFAS website includes both a guide and an interactive searchable directory of FASD diagnostic, intervention and family support resources available in MN.

The Arc of Minnesota is a private, non-profit, statewide voluntary organization. The mission is of AC is to promote and protect the human rights of people with intellectual and developmental disabilities (I/DD) and actively support their full inclusion and participation in the community throughout their lifetimes.

Environmental Public Health Tracking (EPHT) Program is a Minnesota Department of Health program that works in collaboration with state and federal partners to make environmental hazard, exposure, and health data accessible to the public to inform policy and action, and ultimately to protect public health. Adverse reproductive outcomes, including preterm birth, growth restriction, infant mortality, and infertility are available on a county basis by making queries of the EPHT interactive website.