2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
3/06/2023 | 3:15 PM - 3:45 PM | Breaking Silos, Building Systems: Creating Collaboration around Congenital Cytomegalovirus and Newborn Screening | DECC 233
Breaking Silos, Building Systems: Creating Collaboration around Congenital Cytomegalovirus and Newborn Screening
Congenital cytomegalovirus (cCMV) has been nominated for review to be added to the Recommended Uniform Screening Panel (RUSP) and added to at least one state’s newborn screening (NBS) panel. However, many questions remain about the logistics of adding cCMV to NBS programs across the United States. In March 2022, Expecting Health began hosting quarterly meetings of the CONECT work group, a group specifically tasked with collaborating around the potential integration of cCMV into routine NBS, to ask and answer those hard questions. The group is comprised of members of varying expertise in newborn screening and CMV prevention including parents, healthcare providers, researchers, state program representatives, industry representatives, and advocacy and education organization representatives. In this presentation, we will highlight the discussion and work of the group to date, continuing the conversation with the larger community. Specifically, we will outline the what the group has identified as enablers and barriers to screening for cCMV through NBS, highlight areas for continued work and collaboration, and share what the work group sees as the next steps towards success.
- Understand why collaboration is key to success in newborn screening and beyond
- Identify enablers and barriers to the integration of cCMV into public health newborn screening program
- Learn key areas for continued strategizing and collaboration around cCMV and NBS
Presentation:
3420032_15605NatashaBonhomme.pdf
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Natasha Bonhomme
(Primary Presenter), Expecting Health, nbonhomme@gmail.com;
Natasha Bonhomme brings nearly two decades of nonprofit and maternal and child health experience to her role as Founder of Expecting Health at Genetic Alliance. She launched Expecting Health to bring together a range of consumer and professional stakeholders to address the need for clear, science-based information for families and individuals through tangible, actionable messages. Her focus is on bringing public and families’ perspectives into policy and program design and implementation. Her programmatic portfolio includes leading Baby’s First Test, a national resource center that reaches over 600,000 families and health providers annually, being the program director for the HRSA-funded Newborn Screening Family Education Program and participating on numerous committees on maternal health and dignified care throughout the prenatal and postnatal periods. Ms. Bonhomme has also testified in front of Congress on the importance of family support and education in newborn screening. She is an organizational representative (non-voting) to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. She is a Board Member of the DC-based Federally Qualified Health Center, Whitman-Walker Health, which provides affirming community-based care with a special focus on LGBTQ+ and HIV care.
ASHA DISCLOSURE:
Financial -
• Receives Ownership interest for Ownership from Nurture.
• Receives Consulting fee for Consulting from RTI.
• Receives Honoraria excluding diversified mutual funds for Membership on advisory committee or review panels from UNC.
Nonfinancial -
• Has a Professional (member)
relationship for Volunteer membership on advisory committee or review panels.
AAA DISCLOSURE:
Financial -
Financial relationship with Early Check, Research Triangle International (RTI)
Age-Based Genomic Sequencing, University of North Carolina
Nurture Genomics
Genomics Roundtable, National Academies of Science, Engineering, and Medicine.
Nature: -Consulting contract
- Consulting contract
- Co-founder, equity holder
- Member, subcommittee member, speaker.
Nonfinancial -
No relevant nonfinancial relationship exists.