1. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Public Health Newborn Screening Long-term Follow-up Workgroup Collaborating States: Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin

2. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Workgroup Purpose The intent of newborn screening (NBS) is: early identification, accurate diagnosis and treatment of disorders to improve outcomes for individuals found by NBS. State NBS programs have a central role in monitoring long term health outcomes of this population to determine the efficacy of newborn screening. Many of the conditions are rare and not easily identified at birth. Best practices and long term outcomes are largely unknown at present. As a region, States see a need to reach consensus on a way to collect relevant data on this population in a standardized, systematic way that will inform families, primary care providers, specialists and other stakeholders.

3. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Group Goal & Objective Goal to improve effective public health outcome tracking and follow up in States is two fold: – Partner to identify components of an effective State long term follow up system for children with genetic conditions confirmed through NBS. – Collaborate to define and implement a uniform data set for State public health use in collecting essential data and tracking health outcomes for confirmed individuals.

4. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Work Group Process 1.Engage participation and commitment of Region 4 states in ongoing efforts to develop uniform data set; and work toward an effective public health long term follow up system. 2.Build on the success of the Region 4 IBEM-IS grant (now the IBEM- C NIH grant). Use this relational database as a basis for future state data collection initiative. 3.Integrate National performance measures and guidance for LTFU: Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) Performance Evaluation and Assessment Scheme (PEAS) Maternal Child Health Bureau (MCHB) Title V Performance measures SLAITS survey review AAP Medical Home initiatives

5. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Work Group Process 4.Literature review of data systems: California, New England, Mountain States. 5.Examine current HRSA grant plan, logic model, timelines and priorities initially and periodically to evaluate process and progress throughout the project. 6.Address emergent challenges or barriers as a group. 7.Implement a pilot(s) in State(s) for systematic data collection, analysis, interpretation of data, and defining ‘benchmarks’. 8.Utilize tracking data to characterize population, service utilization, health and developmental outcomes; and for program evaluation, policy development and education.

6. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Progress With participating public health workgroup members from each State, we have collectively articulated the LTFU goal as stated earlier. After review of national LTFU priorities, performance measures and current literature, we have identified LTFU program components and relevant surveillance questions that long term follow-up should be able to answer through a uniform data set.

7. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Next Steps Focus of the group will now turn to deciding on a uniform set of data elements common to all confirmed newborn screened disorders and relevant for State LTFU surveillance: i.e., demographic data, health outcomes, developmental and behavioral indicators, coverage of medical care, resource utilization. By partnering with specialists, group will identify significant data elements specific to particular newborn screened conditions.

8. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Members Illinois: Tracy Kreipe, Claudia Nash, Heather Shryock Indiana: Bob Bowman, Kathy Wood Kentucky: Troi Cunningham, Sandy Fawbush, Kupper Wintergerst Michigan: Karen Andruszewski, Janice Bach, Lois Turbett Minnesota: Carolyn Anderson, Melinda Marsolek Ohio: Shelley Nottingham, Anna Starr Wisconsin: Sharon Fleissfresser, Tami Horzeweski, Michelle Kempf-Weibel MPHI / R4 Facilitator: Sally Hiner

9. The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Questions?