The Hemoglobinopathies Workgroup provides a space for families, public health, and clinical providers to share best practices and models for improving newborn screening, follow-up and genetic care coordination for children with hemoglobinopathies and their families. The Hemoglobinopathies Workgroup developed two priorites areas during the 2012 Regional Meeting:
1) Develop a dissemination plan for the Family Centered Pediatric Emergency Department Sickle Cell Assessment of Needs and Strengths (FC-Peds-ED-SCANS) adapted for use with pediatric patients entering care through the emergency department. Follow this to learn more about the development of the tool and for the PDF version here: http://region4genetics.org/Education/Professional.html
2) Complete a systemic review of how states provide follow-up to children diagnosed with sickle cell disease in order to understand the current system challenges and identify next steps to improve public health practices and reduce cases of lost to follow-up.
Log-in to the Hemoglobinopathies Workgroup SharePoint site here: https://connect.mphi.org/sites/reg4genetics/default.aspx
If you do not have a user name and password, or have lost your log-in information, please email email@example.com.