Title of Collaborative Activity: |
Work Group on Harmonizing Hemoglobinopathy Data Sets |
Description of Collaborative Activity: |
The mission of the Workgroup for Harmonizing Hemoglobinopathy Data Sets is to create a resource for federal programs and extramural communities to use in data systems that incorporate data elements in hemoglobinopathies. Specifically this entails establishing a Hemoglobinopathies Uniform Medical Language including: identifying specific goals and objectives for the kind of data that are required by these programs; case definitions for electronic data systems at all levels; consensus about conditions and data elements to be included; and differentiation between data needs for surveillance and for registries/biorepository. |
Type of Collaborative Activity: |
Committee, Advisory Group, or Work Group
|
Year the Collaborative Activity Originated: |
2010 |
NIH Participating Institutes/Centers/Office of the Director: |
NCATS, NHLBI, NICHD, NIGMS, NLM, OD/OER |
HHS Agency Collaborators on this Activity: |
CDC, HRSA |
