Towards a minimal core dataset for systemic lupus erythematosus studies.

ABSTRACT:

Objective

SLE is a complex, heterogenous autoimmune disease. SLE researchers do not always collect the same data, making comparative studies difficult. We aimed to ascertain what variables SLE clinical researchers commonly collect for SLE research. Our ultimate goal is to generate a minimal core dataset for future SLE studies.

Methods

In 2020, we designed and distributed a questionnaire to members of the Systemic Lupus Erythematosus International Collaborating Clinics (SLICC) as well as additional active research centres in China. Our survey included 26 questions about the types of data that are routinely collected for research. Variables collected by ≥75% of participating respondents were used as a threshold for inclusion.

Results

18 of 36 invited respondents replied

SUBMITTER: McDonald S 

PROVIDER: S-EPMC12458853 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature