Getting on the "List" - Recommended Uniform Screening Panel (RUSP)

Newborn Screening SPOTlight Podcast

You're listening to the voice of Dr. Amy Brower, the co-host of the Newborn Screening SPOTlight Podcast. This episode focuses on the common question, What does it take to get on the "list"? The list refers to the Recommended Uniform Screening Panel (RUSP) which is a national guideline for newborn screening (NBS).

Dr. Amy Brower was an inaugural member of a Federal Advisory Committee created during the administration of President George W. Bush. In 2004, the Advisory Committee on Heritable Disorders in Newborns and Children was established under the Public Health Service Act and was charged with advising the Secretary of Health and Human Services about aspects of newborn and childhood screening. Their charter includes recommending improvements in the national newborn and childhood screening programs. This includes making systematic evidence-based and peer-reviewed recommendations on which disorders should be included in newborn screening. During Dr. Brower's tenure on the Committee, they developed a system of nomination and review that was open to all stakeholders. The idea was to encourage not only researchers and clinicians to nominate a condition but also parents, patients, families, and advocacy groups.

Listen to this episode to learn the:

• history of Recommended Uniform Screening Panel (RUSP).
• nomination process on getting a condition added to the RUSP list.
• importance of pilot study in advancing newborn screening research.
• how NBSTRN helps with NBS pilot study.

Here are ways you can get involved with NBS research:

1. Attend a meeting organized by the Advisory Committee on Heritable Disorders in Newborns and Children. Find the meeting dates and time at https://www.hrsa.gov/advisory-committees/heritable-disorders/index.html
2. Support the Newborn Screening Saves Lives Reauthorization Act of 2021. Learn more at https://www.congress.gov/bill/117th-congress/house-bill/482/text
3. Become a member of NBSTRN to connect with communities of researchers, health professionals, families, advocacy groups and state newborn screening programs. Learn more about membership, visit www.nbstrn.org