2022 Early Hearing Detection & Intervention Virtual Conference
March 13 - 15, 2022
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
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Presenters/Authors
Natasha Bonhomme
(), Expecting Health, nbonhomme@gmail.com;
Natasha Bonhomme brings nearly 15 years 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 a range of family, community, and professional stakeholders together to address the need for clearer information, high quality engagement, and scalable solutions in healthcare. Her focus is on centering families' perspectives into policy and program design and implementation. Natasha led and managed an extensive study of women (with more than 2,000 expectant and new mothers) to understand their attitudes towards newborn screening and their preferences on how and when to be educated. She created and oversees, Baby's First Test a national resource center which reaches over 600,000 families and health providers annually. As director of Baby's First Test, Natasha has testified before the US Senate Health, Education, Labor, and Pension Committee's Subcommittee on Children and Families on the importance of public education on screening. She sits on numerous committees on maternal and child health including the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children.
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