# 2026-16396: Feds Assemble Baby Blood Test Brain Trust Workgroup

2026-16396, National Newborn Screening Stakeholder Workgroup, is a Federal Register notice from Health and Human Services Department, Health Resources and Services Administration published 2026-08-12; PRIA reads it as touching household money (as of 2026-08-19).

- Canonical: https://policyrisk.com/federal-register/2026-16396
- As of: 2026-08-19
- Plain-text twin of the page above; the HTML and this file carry the same facts.

## Facts
- Document number: 2026-16396
- Title: National Newborn Screening Stakeholder Workgroup
- Type: Notice
- Agencies: Health and Human Services Department; Health Resources and Services Administration
- Citation: 91 FR 52059
- Published: 2026-08-12
- Effective: unknown
- Comments close: not stated
- Significant: no
- Touches household money: yes
- Regulation identifier numbers: none
- Last updated: 2026-08-19

## In one line

Feds Assemble Baby Blood Test Brain Trust Workgroup

## Summary

HRSA provides funding to support a national center for newborn screening systems known as the National Center for Newborn Screening Systems Excellence (NBS Excel). In fiscal year 2026, supplemental funding is being provided to NBS Excel to establish a national newborn screening stakeholder workgroup. This workgroup will be a pathway for conditions to be considered and recommended for inclusion in the Recommended Uniform Screening Panel (RUSP) and to discuss national- level issues related to newborn screening. Membership will include representatives from a wide range of newborn screening experts and stakeholders. The award recipient will convene the workgroup and develop findings, reports, and recommendations for HRSA's review and consideration. HRSA will then make recommendations to the Secretary of Health and Human Services, who has final decision-making authority on updates to the RUSP.

## Effects PRIA read

- National newborn screening workgroup created: benefit, low. HRSA provided a $700,000 supplemental award in fiscal year 2026 to the Association of Public Health Laboratories to establish a national newborn screening stakeholder workgroup (NBS Excel). The workgroup will be a formal pathway for conditions to be considered and recommended for inclusion in the R…
- New RUSP additions trigger no-cost coverage: benefit, medium. Conditions added to the Recommended Uniform Screening Panel (RUSP) become part of HRSA-supported preventive services; as a result, non-grandfathered health plans are required to cover those screenings without patient cost-sharing beginning one year after the Secretary adopts a condition for screeni…
- States retain discretion to adopt RUSP items: cost, medium. Even if the Secretary adopts a condition for the RUSP, states and territories are not required to screen for every RUSP condition; the RUSP functions as a national framework while state adoption decisions remain voluntary. As of May 2026, the RUSP contains 40 core and 26 secondary conditions.

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## Sources
- [2026-16396 on federalregister.gov](https://www.federalregister.gov/documents/2026/08/12/2026-16396/national-newborn-screening-stakeholder-workgroup)
- [2026-16396 as published (PDF)](https://www.govinfo.gov/content/pkg/FR-2026-08-12/pdf/2026-16396.pdf)

## Related
- [Previous: 2026-16395, Agency Information Collection Activities; Submission to the Office of Managemen…](https://policyrisk.com/federal-register/2026-16395)
- [Next: 2026-16397, Agency Information Collection Activities: Comment Request on the Burden Related…](https://policyrisk.com/federal-register/2026-16397)
- [All Federal Register documents](https://policyrisk.com/federal-register)

Source: PRIA, https://policyrisk.com/federal-register/2026-16396 (as of 2026-08-19).