The state of data sharing in rheumatology: a systematic review of top journal practices

Objective To evaluate data sharing statement (DSS) inclusion within rheumatology clinical studies published over the past 4 years in 10 top rheumatology journals. Methods A systematic review was conducted of rheumatology clinical studies published in 10 leading journals between 1 January 2020 and 31 December 2023. Articles were included if they provided new primary data through original research and excluded if no new primary data were found. Key analyses included descriptive statistics and adjusted logistic regression to examine factors influencing DSS inclusion. The association between study designs was derived from this regression analysis. Results After 46 exclusions, 1108 of 1154 publications met inclusion criteria for analysis. Rheumatology was the most represented journal (285; 25.72%) and clinical trials the most common study design (591; 53.34%). Cohort studies were significantly less likely to include a DSS than clinical trials (adjusted odds ratio: 0.55; 95% CI: 0.37, 0.82; P = 0.004). Overall, 622 articles (56.13%) had a DSS. Six of the eight journals showed an overall increase in DSS inclusion from 2020 to 2023, with Rheumatology reaching 100% in 2023. Theme analysis of the 622 DSSs described most data as conditionally available (552; 88.75%) or requiring a data request (479; 77.01%). Conclusion Our study describes data sharing practices in rheumatology research, highlighting trends in DSS inclusion and journal policies' influence on them. While organizations like the American College of Rheumatology and National Institutes of Health have promoted these practices, inconsistencies remain. We recommend implementing a standardized DSS requirement during author submission to enhance transparency in rheumatology research.