Description Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease characterized by a multi-systemic presentation.¹ Patients with SLE will often see multiple providers operating within different healthcare networks, meaning that pieces of important data related to patients’ disease course may be spread across disparate electronic health records² (EHR). One method for integrating EHR data from multiple sites leverages clinical data research networks (CDRNs), such as the Chicago Area Patient Centered Outcomes Research Network (CAPriCORN),³ which includes data from 11 healthcare sites.

Conclusions These results highlight the importance of linking information across multiple healthcare sites in the context of complex diseases such as SLE, as disease-specific information can be gained through data aggregation. Systems such as CAPriCORN may have important applications in improving recruitment for clinical trials, clinical decision-making for rheumatologists, and population-level surveillance of SLE.

References

1. Cojocaru M, Cojocaru IM, Silosi I, Vrabie CD. Manifestations of systemic lupus erythematosus. Maedica 2011;6(4):330.

2. Walunas TL, Jackson KL, Chung AH, Mancera-Cuevas KA, Erickson DL, Ramsey-Goldman R, et al. Disease outcomes and care fragmentation among patients with systemic lupus erythematosus. Arthritis care & research. 2017;69(9):1369–76.

3. Kho AN, Hynes DM, Goel S, Solomonides AE, Price R, Hota B, et al. CAPriCORN: Chicago Area Patient-Centered Outcomes Research Network. Journal of the American Medical Informatics Association 2014;21(4):607–11.