Birth Defects and Infant Disorders Resources
Birth defects can impact many aspects of an individual’s life, throughout their life. Awareness of birth defects across the lifespan helps equip individuals and families affected by birth defects with information they need to seek the care they need. It is also important for healthcare providers, policymakers, and the broader community to recognize their role in supporting a future where everyone has access to the care and support they need. CDC works with partners to create resources to improve birth defects surveillance, support healthcare provider education, and raise awareness about birth defects and early childhood onset conditions.
- Clinical Decision Support for Alcohol Screening and Brief Intervention | CDC
CDC funded the MITRE Corporation to develop standards-based clinical decision support (CDS) for alcohol screening and brief intervention. These CDS tools can assist with adoption of this important clinical preventive service in primary care settings. Users can integrate the tools into electronic health record (EHR) systems and other digital formats to inform decisions and improve healthcare delivery.
- Congenital Heart Defects Toolkit for Physicians | CDC
In partnership with the American Academy of Pediatrics, CDC created a digital toolkit with resources and online trainings for physicians to help ensure that people with heart defects get the specialized lifelong congenital cardiac care they need. This toolkit contains video trainings, social media materials, customizable content for emails and newsletters, conversation starters, and infographics.
- Fetal Alcohol Spectrum Disorders: Resources for Prevention and Care | CDC
These resources provide tools and education for providers to help prevent alcohol use during pregnancy and provide care for children with Fetal Alcohol Spectrum Disorders (FASDs) and their families.
- Folic Acid Partner Toolkit | CDC
These social media messages, graphics, and resources can help providers raise awareness about the role of folic acid before and during pregnancy in helping to prevent birth defects such as spina bifida and anencephaly.
- Muscular Dystrophy Diagnostic Tools | CDC
Tools to help primary care clinicians, therapists, and other specialists diagnose child muscle weakness. Diagnostic tools can decrease the time between initial signs and first diagnosis and improve early intervention and access to care.
- Birth Defects Tracking Data Modernization Resources | CDC
Birth defects tracking programs want to exchange information accurately, effectively and consistently. Modernizing how these systems collect and use data will help to strengthen the existing programs. These resources support data modernization and interoperability for birth defects surveillance systems.
- SET-NET Partner Toolkit | CDC
CDC’s Surveillance for Emerging Threats to Mothers and Babies Network (SET-NET) aims to understand the outcomes of health threats, such as COVID-19, hepatitis C, syphilis, and Zika, on pregnant people and their babies by collecting data from pregnancy through childhood. These sample messages and visuals help spotlight the important work that SET-NET performs and spread the word about the benefits to families and communities.
- Finding Support for Families Living with Birth Defects | CDC
CDC’s website has information to help families connect with condition-specific organizations and support groups.
- Spina Bifida Care and Research Flyers | CDC
This collection of resources includes guidelines for spina bifida care and tips for managing common care needs.
- “Learn the Signs. Act Early.” | CDC
CDC’s website has information on the developmental milestones children should reach from 2 months to 5 years and information on what to do if there are concerns about a child’s development to help access the services and supports that are available to babies and young children with developmental delays and disabilities and their families.
- Muscular Dystrophy – Tool for Parents Helps Address Concerns | CDC
This online resource is for parents who are concerned about the physical development of their child. Parents can utilize this tool to identify signs of development delays when their child stands, walks, climbs stairs, holds toys, and other activities. This information can be helpful as parents prepare to talk to their child’s doctor.
- National Birth Defects Awareness Month – National Birth Defects Prevention Network (nbdpn.org)
The National Birth Defects Prevention Network (NBDPN) developed this map to help connect individuals with local resources to support a health pregnancy, including free vitamin and vaccine access and mental health support services.
- Resource Directory – FASD United
FASD United maintains a directory to help connect individuals with Fetal Alcohol Spectrum Disorders (FASDs) and their families with the diagnostic, intervention, and other clinical services they need.
- Birth Defects Surveillance Toolkit | CDC
The Birth Defects Surveillance Toolkit serves as a resource for those looking to establish or enhance a surveillance program for birth defects. This resource is intended to primarily support surveillance efforts in developing countries, but does contain materials, such as the image library, that are useful in broader education and training settings.