Commonalities and differences in set-up and data collection across European spondyloarthritis registries - results from the EuroSpA collaboration.

ABSTRACT:

Background

In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs).

Methods

Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey.

Results

Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, b

SUBMITTER: Linde L 

PROVIDER: S-EPMC10585911 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature