Expert consensus achieved on a working core outcome set for cutaneous lupus erythematosus research in survey following the 5th International Conference on Cutaneous Lupus Erythematosus (ICCLE)

No abstract

Aim

This study aimed to assess the endorsement of the working COS by an international sample of
CLE leaders and experts

Contributors

Arianna J Zhang, Lourdes M Perez-Chada, Victoria P Werth, Joseph F Merola

Publication

Journal: LUPUS Science & Medicine
Volume: 11
Issue:
Pages: -
Year: 2024
DOI: 10.1136/lupus-2024-001165

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This project has no direct funding sources. AJZ receives a predoctoral stipend from an NIH T32 (T32TR004418). LMP-C has received grant funding from the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis.

Health Area

Disease Category: Rheumatology

Disease Name: Cutaneous lupus erythematosus

Target Population

Age Range: 18 - 120

Sex: Either

Nature of Intervention:

Stakeholders Involved

- Clinical experts
- Researchers

Study Type

- Recommendations for outcome measures (measurement/how)

Method(s)

- Consensus conference

The proposed COS was presented at the recent Fifth International Conference on Cutaneous Lupus Erythematosus (ICCLE) (JFM). Subsequently, the ICCLE meeting attendees were invited to complete a six survey assessing consensus on the proposed working COS, including endorsement of the ‘core domain’, ‘full domain’ (ie, core domains, optional important domains and research agenda domains) and ‘core outcome measurement’ sets. Additionally, they were asked to vote on their preferred CLASI (Cutaneous Lupus Erythematosus Disease Area and Severity Index) primary endpoint with regard to percentage change compared with baseline (CLASI50, CLASI70 or CLASI90) and the complementary Cutaneous Lupus Activity Investigator’s Global Assessment (revised version) (CLA-IGA-R)
instrument as key secondary (vs co-primary endpoint). Appropriate patient-reported outcome measures were also considered.

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