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10/10/2023  |   11:15 AM - 11:40 AM   |  Flynn

The stories behind the spots: successes and struggles of universal newborn screening for congenital cytomegalovirus

Abstract Summary

In February, 2023 Minnesota became the first state in the nation to universally screen every baby born in Minnesota for congenital cytomegalovirus (cCMV) using dried blood spots. Screening every baby means the entire spectrum of cCMV can be identified, from asymptomatic, healthy babies to babies with systemic infection, well beyond what has been found with other methods. We propose to share real life examples of what universal screening looks like through telling the stories of babies who have undergone this process. We will share anonymized stories of babies who have screened positive for CMV as told through the eyes and ears of newborn screening follow-up staff. We will choose examples from the estimated 36,000 newborns screened and 180 newborns who will have screened positive since the start of screening in Minnesota. We hope to share success stories: where follow-up after a positive screen went well and stories where newborn screening changed an infant’s medical course. We will also share stories that identify areas for improvement: examples that highlight where the current system did not best serve the families, healthcare providers, or newborn screening staff. Babies that do not follow the standard path of cCMV screening and follow-up (e.g., when a family declines follow-up for cCMV, or when a family experiences a false negative result) will also have their story told. By highlighting potential burdens encountered after screening positive for cCMV, we hope that newborn screening programs can work together with healthcare providers, community members, advocacy groups, and other partners to identify ways to reduce barriers and find ways to make the path after a positive screen easier to navigate. We intend for this information to help listeners identify considerations for other newborn screening programs who will be implementing universal cCMV screening and be relevant to advocacy groups and families.

Learning Objectives

  • Demonstrate the variability in follow-up after a positive newborn screen for congenital cytomegalovirus (cCMV)
  • Find indicators of less successful follow-up outcomes
  • Outline potential solutions to barriers in follow-up

Presentation

3440589_16095JennaHullerman Umar.pdf

Handouts

No handouts have been uploaded.

Presenters


Jenna Hullerman Umar | Co-Author

jenna.hullerman.umar@state.mn.us;
Jenna leads short term follow-up for several conditions screened using blood spot testing, including cCMV, at the Minnesota Department of Health. She serves as the main point of contacts for specialists throughout the state who serve families completing initial follow-up testing and diagnosis after an abnormal newborn screening result. Her educational background includes a Bachelor of Arts degree in Biological/Archaeological Anthropology, and a Master of Public Health in Maternal and Child Health Epidemiology. Outside of work, Jenna enjoys reading fantasy novels, nerding out with her family on home science projects, dancing, and learning about other cultures.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Tory Kaye | Author

tory.kaye@state.mn.us;
Tory is an epidemiologist in the Newborn Screening Program at the Minnesota Department of Health. She leads epidemiology for the blood spot program, analyzing the program’s pre-analytical, analytical, and post-analytical dried blood spot data to improve the lives of babies in Minnesota. She received her Bachelors of Science degree in Animal Science and her Masters of Public Health degree both from the University of Minnesota. In her spare time, Tory enjoys camping and anything else involving the outdoors, as well as spending time with her family and friends including cat, 4 turtles,2 goats, and chickens.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


McKayla Gourneau | Co-Author

mckayla.gourneau@state.mn.us;
McKayla is a licensed, certified genetic counselor with the Newborn Screening Program at the Minnesota Department of Health. She provides education around newborn screening results and activities as well as coordinates working groups related to nominated conditions. She received her Bachelors of Arts in Molecular and Cellular Biology from Harvard University and a Masters of Science in Genetic Counseling at the University of Minnesota. In her free time, McKayla enjoys binging medical dramas, trying new restaurants around the Twin Cities, and spending time with friends and her dog.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Jenna Soukup | Co-Author

jenna.soukup@state.mn.us;
Jenna is a licensed, certified genetic counselor with the Newborn Screening Program at the Minnesota Department of Health. She performs result notification to healthcare providers of abnormal newborn screening results. She received her Bachelors of Science in Biochemistry at South Dakota State University and a Masters of Science in Genetic Counseling at the University of Minnesota. In her spare time, Jenna enjoys reading, hiking, tennis, and quilting with her two cats.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Annikka Strong | Co-Author

annikka.strong@state.mn.us;
Annikka works with the Minnesota Department of Health, Newborn Screening Program, Point of Care team. She provides follow-up for Minnesota babies' inpatient newborn screening results and audiology journey. She also coordinates follow-up on lost to follow-up cases sent to Local Public Health contacts and leads audiologic follow-up for confirmed congenital CMV cases.

ASHA DISCLOSURE

Financial -

Nonfinancial -

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Kirsten Coverstone | Author, Co-Author

kirsten.coverstone@state.mn.us;
Dr. Kirsten Coverstone is an audiologist at the Minnesota Department of Health (MDH) Newborn Screening Program. As a coordinator of Minnesota’s EHDI program, Kirsten has worked at the local, state, and national levels to support best practice for universal newborn screening, timely & complete audiologic follow-up for hearing, and early access to intervention. In addition, Kirsten implemented the statewide hearing instrument loaner program for infants and young children in Minnesota. Universal screening, education, and follow-up for congenital cytomegalovirus (cCMV) has been a longstanding aspiration as cCMV is the leading cause of non-genetic hearing loss and is intricately related to EHDI. She has served as Co-Chair of the Joint Committee on Infant Hearing (JCIH), & Co-Chair of the Center for Disease Control (CDC) EHDI Data Committee.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Lexie Barber | Co-Author

lexie.barber@state.mn.us;
Lexie Barber is an epidemiologist in the Longitudinal Follow-up unit at the Minnesota Department of Health (MDH) focusing on congenital CMV and heritable conditions. Lexie joined the team in December 2022. Previously, she worked in the infectious disease divisions at MDH and the North Dakota Department of Health working mainly in vaccine preventable diseases. Lexie received her Bachelor of Science in microbiology at North Dakota State University and her Master of Public Health in environmental health from the University of Minnesota.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Gina Liverseed | Co-Author

gina.liverseed@state.mn.us;
Gina Liverseed is the CMV Nurse Specialist in the Children and Youth with Special Health Needs section at the Minnesota Department of Health. In this role, she is responsible for coordinating the longitudinal follow-up of children identified with congenital CMV and providing education about CMV to public and provider audiences. She holds Bachelor and Master of Nursing degrees from the University Minnesota and a Doctor of Nursing Practice degree from the University of North Dakota. Gina has over 20 years of experience working as a maternal-child health nurse and a Women’s Health Nurse Practitioner. She has a special interest in perinatal infectious disease.

ASHA DISCLOSURE

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - No relevant financial relationship exists.


Sondra Rosendahl | Primary Presenter, Author, Co-Author

sondra.rosendahl@state.mn.us;
Sondra is a licensed genetic counselor who has been with the Minnesota Department of Health (MDH) Newborn Screening Program since 2011. Sondra is the coordinator of MDH’s Advisory Committee on Heritable and Congenital Disorders whose role is to provide advice and recommendations to the Minnesota Commissioner of Health concerning tests and treatments for disorders found in newborn children.

ASHA DISCLOSURE

Financial - Receives Grants for Other activities from Centers for Disease Control & Prevention.  

Nonfinancial - No relevant nonfinancial relationship exists.

AAA DISCLOSURE

Financial - Receives support from Centers for Disease Control & Prevention for MDH has received a cooperative grant for laboratory surveillance: Epidemiology and Laboratory Capacity for Prevention and Control of Emerging Infectious Diseases.