Newborn Screening Propel

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. All information collected will be kept private, and any personal information will be destroyed once the project is complete. 

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.

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.  

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. 

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.  

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. 

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.