Newborn Screening Propel

Your feedback is important to us. If you received a letter inviting you to participate in a survey, please consider filling it out. 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 through NBS Propel.

While not anonymous, all survey responses will be kept confidential and will be de-identified. Your name and your child’s name will never be released as being diagnosed with congenital CMV, having completed the survey, or having been asked to participate.  

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

The survey will ask questions about 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.

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.

MDH has partnered with individuals and organizations in Minnesota who can help parents and caregivers fill out the survey. If you speak Spanish or Somali and would like more information or to be connected, contact health.cyshn@state.mn.us with “NBS Propel” in the email subject line. 

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.