Lost to Follow Up

children of various ages running together holding hands

The Midwest Genetics Network (MGN) has partnered with the Michigan Department of Health and Human Services on a project to identify individuals diagnosed with Phenylketonuria (PKU) who have been lost to follow-up. The goal of the project is to reconnect these individuals to updated information and services related to their diagnosis. Prior to the 1980s, the importance of being on diet treatment for life was not known. Consequently, those who may not have remained connected to current treatment recommendations or care providers may have less than optimal clinical and self management. MGN is currently piloting this project in Michigan and has plans to expand to other states with the possibility of focusing on other inborn errors of metabolism.

For additional information please contact Kaitlin Justice at kjustice@mphi.org