Feasibility and preliminary data for a State-wide South Carolina Lupus Registry.
Brittany L SmallsTrevor D FaithHetlena JohnsonEdith Marie WilliamsPublished in: Lupus (2021)
A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.
Keyphrases
- systemic lupus erythematosus
- disease activity
- clinical trial
- rheumatoid arthritis
- healthcare
- end stage renal disease
- ejection fraction
- newly diagnosed
- mental health
- chronic kidney disease
- physical activity
- randomized controlled trial
- case report
- prognostic factors
- electronic health record
- machine learning
- patient reported outcomes