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The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Hemoglobinopathies Workgroup Update Regional Meeting.

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Presentation on theme: "The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Hemoglobinopathies Workgroup Update Regional Meeting."— Presentation transcript:

1 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Hemoglobinopathies Workgroup Update Regional Meeting 2012 September 10-12

2 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 HGB Workgroup Workgroup Outcome: Identification and/or adaption of best practices and models for improving newborn screening, follow-up, and genetic care coordination for children with hemoglobinapathies.

3 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 HGB Workgroup Issues Identified: Emergency Room Departments Concerns Transition Address the Lack of Physicians Awareness Educate providers and parents about the importance of a medical home for persons with hemoglobinapathies Educate parents and providers about trait and athletic activity

4 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 HGB Workgroup Members Anna Star Arleatha Camper Beau Crabb Cheryl Jones Kanosha Leonard Kisha Braswell Linda Drawhorn Bill Young Mary Sue Flora Meadow Heiman Michelle Kempf-Weibel Neferteria Prince-Demus Shonda King Co-Leads: Lisa Mani TaLana Hughes Consultant: Paula Tanabe Region 4 Staff: Sally Hiner Lisa Gorman

5 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Focus for 2011-2012 Improve emergency department care of children with sickle cell disease Emergency Department Sickle Cell Assessment of Needs and Strengths (ED-SCANS) MyEIF.org

6 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092 Process Evaluate the use of MyEIF.org for children with sickle cell disease Adapt ED-SCANS for use with children 9 focus groups conducted – Illinois (parent) – SCDAA National Conference (parent) – Kentucky (ED nurse & physician) – Ohio (ED nurse & physician) – Wisconsin (ED nurse & physician) – Minnesota (ED nurse) Feedback incorporated into adaption of ED-SCANS

7 The Region 4 Genetics Collaborative is a project of MPHI and is funded by HRSA/MCHB Grant # H46MC24092

8 Next Steps – ED-SCANS will be posted on website November 1, 2012 sickleemergency@duke.edu sickleemergency@duke.edu – Region 4 next steps  Dissemination of Pediatric ED-SCANS  Workgroup with SCD focus

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