MSRGN Newborn Screening Family Listening Sessions Final Report

Background Information

In August of 2023, HRSA reached out to Mountain States Regional Genetics Network (MSRGN) for assistance with a family outcome newborn screening project. Supplemental funding was provided to MSRGN and each Regional Genetics Network (7) to support engagement of family leaders, especially those from underserved populations. The goal was to provide meaningful input on measures of newborn screening family engagement and family outcomes for use in an instrument (to be created by RTI) to assess outcomes of families with children identified through NBS. This project was to be done in partnership with RTI, the NBS Excel awardee for the family outcomes instrument. 

The family recruiting commenced in January 2024 with a goal of having at least two families per state in the MSRGN region (8 states: AZ, CO, MT, NV, NM, TX, UT, WY) who had experienced receiving a positive newborn screen result for a blood spot condition for their child or loved one, participate in the listening sessions. A flyer about the sessions was developed and approved by HRSA for circulation  and this news post announcing the listening sessions, was posted to the MSRGN website.  The two listening sessions were held March 11 and March 15, 2024, with 19 families across the MSRGN region participating. We are appreciative to the all those who participated from our region!


Final Report

The final report for these listening sessions on newborn screening family outcomes marking the completion of this supplemental funding can be found and downloaded here.

We hope that this work and family input will continue to inform providers, public health and NBS professionals, and families, into a future where continuous improvements for family outcomes will be made (even beyond when MSRGN sunsets).