I am a public health professional who would like to learn more about genetics and newborn screening, where can I learn more?
Newborn screening has a history of over 50 years in the public health sector. The Newborn Screening Story was captured by APHL in this publication and documents over 50 years of Newborn Screening in America.
Baby’s First Test, the national newborn screening clearinghouse for information on newborn screening for families, has NBS training resources available at their site.
For continuing education credits, you can explore these genetics modules for health professionals.
I am in outreach and education in the public health arena and would like to increase our outreach efforts in genetics and newborn screening. Who can I reach out to?
There are many ways to reach out and partner with your local community for educational purposes. Some ideas include:
- connecting with your state partners and MSGRN state teams
- partnering with your local American Academy of Pediatrics Chapter
- collaborating with local and national support groups (NORD and Genetic Alliance) for conditions you screen
- attending our MSRGN Genetic Summit to network with professionals and consumers from your state and region.
I am a newborn screening public health professional and want to connect with public health professionals in other states and regions on quality improvement (QI) projects. What is available nationally regarding QI?
A number of organizations are interested in quality improvements for newborn screening nationwide.
Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs), is a program funded through a cooperative agreement to the Association of Public Health Laboratories (APHL) by the Genetic Services Branch of the Health Resources and Services Administration (HRSA). NewSTEPs provides quality improvement initiatives, an innovative data repository and technical resources for newborn screening programs.
CDC’s Newborn Screening and Molecular Biology Branch manages the Newborn Screening Quality Assurance Program (NSQAP) to enhance and maintain the quality and accuracy of newborn screening results.
Newborn screening timeliness has been an ongoing quality improvement project in our region. Take a look at our “Past Projects” page to see the progress states in our region have made.
I work in the NBS laboratory in our Public Health Lab and would like to know about the outcomes of families with the conditions that I test for daily? How can I learn more about how these conditions impact families?
The Arizona Department of Health featured a year worth of stories on various newborn screening conditions. You can read those stories from the links on this page. Babies First Test, the national clearinghouse for newborn screening information for families, has featured a number of family stories on its site. APHL Blog has featured: “Newborn Screening Saved these Babies, How are they Doing Now?”
I work in the NBS laboratory in our Public Health Lab and I am involved with creating and implementing educational materials for newborn screening. Where can I find resources to help with these educational materials?
Advisory Committee on Heritable Disorders in Newborns and Children provides a Educational Planning Guide: The Newborn Screening Educational Planning Guide to help newborn screening programs to develop and improve their educational resources.
How can I learn best practices, ask questions and connect with other newborn screening and genetics public health professionals across the United States?
There are many opportunities to connect both regionally and nationally, virtually or in-person.
The APHL’s Newborn Screening and Genetic Testing Symposium is held every 18 months. This in-person meeting is a wealth of information for public health professionals.
Two email list serves are available for the Public Health Community:
- NewSTEPs email list serve: aphl-NewSTEPs: email@example.com
- To subscribe – please contact – firstname.lastname@example.org
- Newborn screening email list serve: NBS-LIST: NBS@lists.uthscsa.edu
- To subscribe – please contact – email@example.com
I work in the newborn screening lab and need to reference laboratory standards for newborn screening. Where can I go to find that info?
The Clinical and Laboratory Standards Institute (CLSI) maintains laboratory standards for various clinical laboratory tests including those done for newborn screening. Click here to view them.
The American College of Medical Genetics (ACMG) has guidelines for testing for clinical genetics laboratories.