Bethesda, MD: The Newborn Screening Translational Research Network (NBSTRN) announced the launch of its new podcast, Newborn Screening SPOTlight. This professionally produced podcast is about advancements in newborn screening and both common and rare disease research told by health professionals, researchers, parents, and advocates. The goal of the Newborn Screening SPOTlightpodcast is to share stories on how newborn screening research saves the lives of babies every day through discoveries of new technologies and treatments. The podcast is co-hosted by Drs. Amy Brower and Kee Chan who will be interviewing experts who treat babies, the families who care for them, and the researchers who make newborn screening the lifesaving initiative that it is today.
The first five episodes of the Newborn Screening SPOTlight Podcast are available now and can be heard on Apple Podcasts, Google Podcasts, Spotify, Amazon Music/Audible, and iHeartRadio where listeners may also subscribe to the podcast and share an episode.
- Episode 1: NBSTRN Trailer by the co-hosts, who will introduce the purpose of the podcast, which is to connect and grow a community to help advance newborn screening research.
- Episode 2: A Brief History of Newborn Screening by Dr. R. Rodney Howell, who has played a significant role in the advancement of newborn screening research. He was founding chair of the U.S. Congressionally-mandated Secretary’s Advisory Committee of Heritable Disorders in Newborns and Children (2004-2011) and a current member of the NBSTRN Steering Committee.
- Episode 3: Caring for my Child with ADA-SCID by Caroline Nachem, a parent and advocate for newborn screening for Severe Combined Immunodeficiency (SCID) shares her experiences with caring for a child with a genetic condition.
- Episode 4: Getting on the “List” – Recommended Uniform Screening Panel (RUSP) by Dr. Amy Brower who is the co-Principal Investigator of NBSTRN. She will share resources on the condition nomination process.
- Episode 5: Exploring the Newborn Screening System from Discovery to Diagnosis by Dr. Jennifer Taylor who is a genomic scientist at NBSTRN. She will highlight the research and technology development in newborn screening.
By engaging with the newborn screening community through storytelling, NBSTRN aims to disseminate the important research and impact made by key stakeholders, demystify newborn screening research to the public and increase rare disease advocacy.
About NBSTRN: NBSTRN is a key component of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Hunter Kelly Newborn Screening Research Program. The American College of Medical Genetics and Genomics (ACMG) operates the NBSTRN through a contract from NICHD. The NBSTRN mission is to facilitate newborn screening research to discover novel technologies, treatments, and interventions through the development of resources, tools, and expertise. To learn more about the data tools and resources, and join the NBSTRN efforts to help advance newborn screening research, visit www.nbstrn.org.