National CMV Foundation Nominates Congenital CMV for RUSP Newborn Screening
National CMV Foundation and the CMV RUSP Nomination Team are excited to announce we have completed the submission of cytomegalovirus to the Recommended Uniform Screening Panel (RUSP). Administered by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), part of the Department of Health and Human Services, the RUSP is a list of 35 core conditions and 26 secondary conditions that all newborns in the US are recommended to be screened for.
“Universal screening will provide the public and researchers with much better data about scope of impact and will very likely lead to greater investment in treatment and vaccine research,” said Sara Doutre, National CMV Foundation scientific advisory committee chair. “We are excited to take the first step of nominating this virus to the Advisory Committee on Heritable Disorders in Newborns and Children for inclusion on the RUSP and supporting their review with any necessary trials and supplemental research.”
The
RUSP application was prepared and submitted by a newborn screening working group comprised of staff and members of the board of directors of National CMV Foundation, a multi-disciplinary panel of CMV clinicians and researchers, and industry partners.
Submission to the RUSP is a critical first step toward our goal of having CMV added to state newborn screening programs across the US. “Congenital CMV is the number one cause of congenital abnormalities in newborns,” said Dr. Stanley Plotkin, M.D. “Largely ignored as a public health problem, development of effective screening tools and therapies make it possible to support positive health outcomes for thousands of newborns.”
Most states also have their own process for evaluating which diseases are included on their newborn screening panels, so advocacy at the state level will continue to be important even if CMV is added to the RUSP. "We’ve made significant progress over the last 30 years in the development of screening tools and therapeutic advances for treating babies with congenital CMV,” said David Kimberlin, Professor of Pediatrics and Co-Director of the Division of Pediatric Infectious Diseases at the University of Alabama at Birmingham. “The time is right to begin testing every child.”
Next Steps
The SACHDNC will review the completed nomination package and will compile a summary for consideration. If there is sufficient evidence for review, our application will progress to an external workgroup. If not, we will be provided with feedback in which we will update our application and resubmit.
The CMV RUSP Nomination Team will support the RUSP application through continued testimony before the SACHDNC. In addition, National CMV Foundation is actively working on other aspects of newborn screening advocacy.
Get Involved
As newborn screening for CMV continues to move forward, and particularly as state-level efforts get underway, we will need “CMV champions” in all 50 states to help advocate on behalf of our community. If you are interested in receiving periodic updates on how you can get involved in these efforts, email
advocacy@nationalcmv.org.
To make immediate impact, please visit our
Change.org petition requesting SACHDNC’s consideration and nomination to the Secretary of Health and Human Services for RUSP inclusion. And share wildly!
Thank You
We would like to acknowledge members of the nomination team who invested significant time and lent their expertise to this application.
Sara Doutre
Chair, Scientific Advisory Committee
National CMV Foundation
Janelle Greenlee
Chair, RUSP Nomination Team
National CMV Foundation
Kristen Hutchinson Spytek
President and CEO
National CMV Foundation
Roy D. Baynes, M.D., Ph.D.
Senior Vice President & Head Global Clinical Development
Chief Medical Officer, Merck
Suresh B. Boppana, M.D.
Hugh Dillon, MD Endowed Professor of Pediatrics
Department of Pediatrics
University of Alabama Birmingham
Gail J. Demmler Harrison, M.D.
Professor Pediatrics, Baylor College of Medicine
Attending Physician, Infectious Diseases Service
Texas Children’s Hospital
Marcia Fort
Past President, Directors of Speech and Hearing Programs in State Health and Welfare Agencies
Genetics and Newborn Screening Unit Manager and EHDI Coordinator, North Carolina
William C. Gruber, M.D., FAAP, FIDSA
Senior Vice President, Vaccine Clinical Research and Development
Pfizer, Inc.
Karen B. Fowler, DrPH
Professor
Department of Pediatrics
University of Alabama Birmingham
Kathrin U. Jansen, Ph.D.
Senior Vice President and Head, Vaccine Research and Development
Pfizer, Inc.
David W. Kimberlin, M.D.
Co-Director, Division of Pediatric Infectious Diseases
Sergio Stagno MD Endowed Chair in Infectious Diseases
Department of Pediatrics, University of Alabama Birmingham
Adrin Nazarian
Assembly Member
California Legislature
Stanley A Plotkin
Professor Emeritus of Pediatrics, University of Pennsylvania
Professor Emeritus, Wistar Institute, Philadelphia
Adjunct Professor, Johns Hopkins University, Baltimore
Shannon A. Ross, M.D.
Associate Professor
Department of Pediatrics
University of Alabama Birmingham
Pablo J. Sánchez, M.D.
Professor of Pediatrics
Divisions of Neonatal-Perinatal Medicine and Pediatric Infectious Diseases
Nationwide Children’s Hospital, The Ohio State University
Mark R. Schleiss, M.D.
American Legion and Auxiliary Heart Research Foundation
Professor, Division of Pediatric Infectious Diseases and Immunology
University of Minnesota Medical School
Karl R. White, Ph.D.
Director, National Center for Hearing Assessment and Management
Professor of Psychology
Utah State University
Posted: 4/4/2019
Category: Advocacy, Awareness, Community, "Fueling Our Mission"