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9/25/2018  |   12:00 PM - 12:30 PM   |  Diamond Ballroom I

Progress Toward Stakeholder Support of Universal Newborn CMV Screening: State and National Experiences

In March 2017, Lancet Infectious Disease published consensus recommendations for prevention, diagnosis, and therapy for congenital CMV agreed to by an International Congenital Cytomegalovirus Recommendations Group. The consensus recommendations include that “consideration should be given to universal neonatal cytomegalovirus screening to enable early detection of congenital cytomegalovirus-infected infants, facilitating early detection and intervention for sensorineural hearing loss and developmental delay where appropriate. In this session, members of the recommendations group will discuss the evidence for and progress toward universal newborn CMV screening in the United States over the past five years and the key barriers to universal screening. Advances made in treatment of congenital CMV and the inclusion of congenital infections in the considerations for eligibility for early intervention services have increased the feasibility of universal newborn CMV screening. Key barriers to implementation include discrepancies in costs for CMV screening, lack of infrastructure to collect specimens other than blood for the newborn screening, and the lack of protocol for infants identified with congenital CMV that show no signs of hearing loss or developmental delay. This presentation will provide professionals, policy makers, and parents with key information needed to inform stakeholders about the evidence for and barriers to universal screening. Presenters will share experiences with exploring universal newborn CMV screening at the state and national level including the creation of working groups to study screening and the evolution of positions on newborn screening by national associations and organizations.

  • Describe the findings of the International consensus group on universal newborn CMV screening.
  • Identify key barriers to universal newborn CMV screening and progress made to overcome those barriers.
  • Experiment with different ways of promoting universal newborn CMV screening.

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Janelle Greenlee (Primary Presenter,Co-Presenter), janellegreenlee@gmail.com;
Janelle Greenlee is a co-founder of the National CMV Foundation, a 501c3 non-profit organization dedicated to promoting awareness, providing access to resources and sharing prevention information to eliminate congenital CMV. A graduate of California Polytechnic State University with a background in marketing and public relations, Janelle developed the Stop CMV brand and website after her twin daughters were born affected with congenital CMV in 2003. Under her leadership, Stop CMV transitioned from an international web-based grassroots movement into a 501c3 non-profit organization, active from 2009 to 2015. Alongside the leadership from complementary partner organizations dedicated to CMV, Janelle co-founded the National CMV Foundation in 2015 and currently leads the California CMV Project in 2017, a grassroots movement dedicated to the expansion and improvement of California's state public health policy related to congenital CMV.

      ASHA DISCLOSURE:

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.




Sara Doutre (Co-Presenter), saradoutre@gmail.com;
Sara Doutre's daughter, Daisy, is deaf due to congenital CMV. Sara is a former special education teacher and worked for the United States Department of Education's Office of Special Education Programs. She is a special education policy consultant and advises states on special education, disability and early intervention policy. Sara worked on Utah's CMV legislation and is a co-founder and board member for the National CMV Foundation.

      ASHA DISCLOSURE:

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.