The Region 4 Midwest Genetics Collaborative is one of the seven regional collaborative groups formed and is made up of seven states: Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin. The project is administered by Michigan Public Health Institute in Okemos, Michigan. Since the initiation of Region 4 in 2004, a great deal of progress has been made to promote sharing among states and the maximization of available newborn screening and genetic resources.
Region 4 uses a regional approach to improve access to services, quality care, and genetics expertise in a medical home environment that is culturally sensitive. There are over 120 members from the seven states representing state public health agencies, geneticist and other sub specialists, primary care providers, newborn screening and genetic testing laboratories and families of children with genetic conditions.
With the new funding cycle, we have a few changes and two Region 4 projects have moved on to be funded at at the national level:
MS/MS Data Project and Laboratory Quality Improvement of NBS by MS/MS (Region 4 Stork)
This project will now be housed by ACMG/NBSTRN and has been renamed the Collaborative Laboratory Integrated Reports (CLIR)
The new website is: http://www.clir-r4s.org/
Inborn Errors of Metabolism Collaborative
In 2010, MPHI was awarded funding from the National Insitutes for Health to continue the work of IBEM-IS and launch the Inborn Errors of Metabolism Collaborative (IBEMC) to collect longitudinal data capturing the clinical progress of persons affected with inborn errors of metabolism, (conditions identified by newborn screening). This data is used to explore their survival, medical status, long-term outcomes, and permit development of evidence-based practice in their care. The data base allows for investigation of:1) the relationship between NBS values, genotype and early manifestations and complications of inborn errors of metabolism and 2) current interventions (nutritional and therapeutic) for treating children with metabolic disorders the effectiveness of current interventions (nutritional and therapeutic) for specific metabolic disorders identified through newborn screening. The website is http://www.ibem-is.org and the Collaborative’s SharePoint site can be accessed here: https://connect.mphi.org/sites/ibemc/Pages/default.aspx.
If you need access to the IBEMC site, please contact Sally Hiner at firstname.lastname@example.org