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 which 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
- Differentiation between data needs for surveillance and for registries/biorepository |
Type of Collaborative Activity: |
Select Type of Collaborative Activity
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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 |
