Lead: Julie Panepinto (Greater Plains Collaborative CDRN)
Co-Lead(s): Michael DeBaun
Parent/Patient Lead: Fouza Yusef
The Sickle Cell Disease Research Interest Group (RIG) aims to develop a rapid learning health system. Learning health systems (LHS), by leveraging big data from electronic health records, can improve health outcomes and support observational and clinical trial research. In addition, the LHS supports performance improvement that can increase the quality of care provided to these patients. The early work of the sickle cell disease RIG is focusing on developing the computable phenotype and algorithms needed to identify a cohort of patients with sickle cell disease across health systems and to identify the specific genotypes. In addition, the RIG will focus on investigating and establishing definitions of patient outcomes relevant to sickle cell disease such as pain and ACS and tracking of patient treatment such as hydroxyurea and transfusions that can then be verified and validated within multiple centers. The RIG welcomes focused scientific research questions that are relevant to sickle cell disease that may be utilized within the LHS.
Prioritization of condition-specific research topics:
- The process will involve multiple stakeholders from the SCD community: researchers, clinicians, patients, and family members
- An online platform will be used that will allow participants to rank and edit research topics.
- If you would like to take part in this activity, please send us an email at firstname.lastname@example.org