The Sickle Cell Disease (SCD) Data Quality Project Team Charge is to:
- Develop and execute the Data Hub’s data quality strategy,
- Monitor data quality,
- Identify and execute on priorities,
- Advise on sources of real-world data and data acquisition methods,
- Develop and test computable phenotypes to generate high-value analytic datasets,
- Create resources that describe Data Hub data quality for researchers and statisticians,
- Advise on alignment with national data and medical informatics standards,
- Obtain input and feedback on data quality needs and priorities from the Research Network and participating Data Hub investigators, and
- Provide input on the feasibility of Data Hub research proposals.
The chair of the SCD Data Quality Project team will convene ASH RC Research Network participants and other experts depending on the topic(s) to be addressed.