Newborn Screening Propel  

Newborn Screening (NBS) Propel aims to improve the newborn screening system for all Minnesota infants and their families. MDH is partnering with RTI International to implement focus groups and administer a survey to learn more about parents and families experiences with the newborn screening system. Parents and caregivers of infants and children identified with congenital cytomegalovirus (CMV) through newborn screening will be invited to participate. There will also be an opportunity for providers serving infants and children with congenital CMV to give input in focus groups. This project is being administered by the Minnesota Department of Health (MDH) and RTI International through federal funding from the   Division of Services for Children with Special Health Needs NBS Propel Awards.  

Page contents

• I received the NBS Propel Survey or was asked to participate in a focus group. Should I fill it out/participate? 
• Do I have to participate?
• Why are parent and caregiver experiences included?
• Why did the survey come from RTI International?
• How did you get my contact information?
• Who do I contact with questions?

I received the NBS Propel Survey or was asked to participate in a focus group. Should I fill it out/participate?

Your feedback is important to us. If you received a letter inviting you to participate in a focus group, please consider filling out the interest form. Focus groups will last no more than 90 minutes, and participants will receive a gift card for their time. Infants and children diagnosed with newborn screening conditions, parents and caregivers of children with newborn screening conditions, healthcare providers, and public health professionals will benefit from what we learn from this survey. 

Do I have to participate?

No. Your participation is up to you. Nothing will happen if you decide not to participate in a focus group. You can skip any question and you can stop at any time.  

What questions are included in the survey?

During the focus groups, questions will be asked about both the caregiver and the child diagnosed with congenital CMV regarding their experience with newborn screening, access to healthcare providers, ability to access other supports, social experiences, and quality of life. 

Why are parent and caregiver experiences included?

The experiences of parents and caregivers help inform our understanding of what children diagnosed with a newborn screening condition and their families need. This information will help MDH understand how it can improve the newborn screening system and guide interventions to better support families.  

Why did the survey or focus group request come from RTI International?

MDH has partnered with RTI International for this project. The information gathered by RTI International will be shared back with MDH to improve the newborn screening system for all Minnesota families and infants. 

How did you get my contact information?

The MDH Newborn Screening Program collects information from hospitals and clinics for infants and children diagnosed with over 60 conditions included on the newborn screening panel, including congenital CMV. We use the information that we gather to know if children and their families get the support and resources they want and need.

For more information on data collection, please refer to Questions & Answers about Data Collection: Long-term follow-up for children with newborn screening conditions.

Who do I contact with questions?

Please contact health.cyshn@state.mn.us or call 651-201-3650 for more information.