Our History
Creation of the Workgroup
In August 2026, the US Health Resources and Services Administration (HRSA) announced a modernized framework for addressing national newborn screening topics, designed to strengthen the national review process, increase transparency, and better respond to advances in science. As part of this effort, APHL, through the National Center for Newborn Screening Systems Excellence (NBS Excel), convened the National Collaboration to Advance Newborn Screening (NCANS) Workgroup.
Read our press release
Our Work
About the NCANS Workgroup
The NCANS workgroup serves as a national forum for addressing broader issues that impact newborn screening systems across the United States, informing national newborn screening priorities and recommendations, and evaluating candidate conditions for the Recommended Uniform Screening Panel (RUSP).
The workgroup examines a range of topics relevant to the future of newborn screening, including:
- Candidate conditions for newborn screening
- Emerging technologies and genomic applications
- Data, informatics and health information systems
- Follow-up and long-term outcomes
- Public health policy and implementation
- Evidence review and research
- Access and patient engagement
- Education, communication and public awareness
- Newborn screening program operations and administration
The workgroup brings together individuals with a wide range of experiences and perspectives, including people with lived experience, family and advocacy representatives, healthcare providers, public health practitioners, laboratory professionals, researchers and subject matter experts from across the newborn screening system.
- Lived Experience: lived experience
- Family Advocacy: family or patient advocacy organization
- Laboratory: newborn screening laboratory expertise
- Follow-up: short-term follow-up; long-term follow-up
- Clinical Care: primary care or pediatrics; specialty clinical care; rural or resource-limited settings
- Public Health: public health operations; public health practice; public health policy
- Research, Evidence & Ethics: research or evidence review; bioethics; health economics
- Genomics & Technology: genomics or emerging technology; health information technology
- Communications, Education & Engagement: communications, education or public engagement
- Fran Altmaier, BSW
Follow-up · Public Health · Communications, Education & Engagement - Don Bailey, PhD
Chair | Lived Experience · Family Advocacy · Public Health · Research, Evidence & Ethics · Communications, Education & Engagement - Jonathan Berg, MD, PhD
Clinical Care · Research, Evidence & Ethics · Genomics & Technology - Michele Caggana, ScD
Laboratory · Follow-up · Public Health · Research, Evidence & Ethics · Genomics & Technology · Communications, Education & Engagement - Neena Champaigne, MD
Follow-up · Clinical Care · Communications, Education & Engagement - Jennifer Gannon, MD
Clinical Care · Research, Evidence & Ethics - Aaron Goldenberg, PhD, MPH
Public Health · Research, Evidence & Ethics · Communications, Education & Engagement - Jennifer Hauser, MPH, RN, PHN
Follow-up · Public Health - Joni Hollis, RN, MSN, CNL
Lived Experience · Follow-up · Clinical Care · Public Health · Communications, Education & Engagement - Zhanzhi (Mike) Hu, PhD
Lived Experience · Family Advocacy · Laboratory · Research, Evidence & Ethics · Genomics & Technology · Communications, Education & Engagement - Margie Ream, MD, PhD
Follow-up · Clinical Care · Research, Evidence & Ethics · Communications, Education & Engagement - Brendan Reilly
Laboratory · Follow-up · Public Health · Research, Evidence & Ethics · Genomics & Technology · Communications, Education & Engagement - Laura Rodriguez
Lived Experience · Communications, Education & Engagement - Robert Steiner, MD
Family Advocacy · Laboratory · Follow-up · Clinical Care · Public Health · Research, Evidence & Ethics · Genomics & Technology - Hadley Stevens Smith, PhD, MPSA
Public Health · Research, Evidence & Ethics · Genomics & Technology - Susan Tanksley, PhD
Laboratory · Public Health · Research, Evidence & Ethics - Melissa Wasserstein, MD
Follow-up · Clinical Care · Research, Evidence & Ethics · Genomics & Technology · Communications, Education & Engagement - Twaina Williams, CHW
Lived Experience · Family Advocacy · Follow-up - Erica Wright, MS, CGC
Follow-up · Clinical Care · Public Health · Genomics & Technology · Communications, Education & Engagement
APHL convenes and facilitates the workgroup and supports its activities by coordinating meetings, facilitating discussions, and synthesizing findings, reports and recommendations for HRSA's review and consideration.
Join Us
NCANS Workgroup Public Meeting
The workgroup will hold its inaugural public meeting in December 2026 to gather perspectives from across the newborn screening system. Participants will include people with lived experience, family and advocacy representatives, healthcare professionals, laboratory and public health, researchers and other stakeholders committed to advancing newborn screening in the United States. including people with lived experience, family and advocacy representatives, healthcare professionals, public health practitioners, laboratory professionals, researchers and subject matter experts.
Participants may attend in person or virtually.
Important Registration Deadlines:
- November 20, 2026: Deadline to register to provide public comment
- November 30, 2026: Virtual registration closes
- In-person registration: Closes when venue capacity is reached
The inaugural public meeting of the National Collaboration to Advance Newborn Screening (NCANS) Workgroup will gather perspectives from across the newborn screening system to inform the future of newborn screening in the US.
