Evaluating Tools to Communicate Scleroderma Research Results to Patients

Launched by LADY DAVIS INSTITUTE · Apr 17, 2024

Keywords

ClinConnect Summary

This clinical trial is focused on finding the best ways to share research results about scleroderma, a rare autoimmune disease, with patients. Researchers know it’s important to keep patients informed about study findings, but often this information is not shared effectively. In this trial, participants will compare two different ways of presenting study results: one using a visual infographic and the other using a simple written summary. Participants will help evaluate which method is clearer and easier to understand.

To participate, individuals must be at least 18 years old, fluent in English or French, and diagnosed with systemic sclerosis, as confirmed by a physician. They should also be part of the SPIN Cohort, which involves completing certain assessments within the last year. Participants will be randomly assigned to receive one of the two communication tools and will provide feedback on how well each tool conveys the information. This feedback will help improve how research results are shared with patients in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. Enrollment in SPIN Cohort, which requires a systemic sclerosis (SSc) classification by a site physician based on 2013 American College of Rheumatology/European League Against Rheumatism criteria, ≥18 years old, being fluent in English or French, and have completed one SPIN Cohort assessment in the last year.
• • 2. External enrollment with patient-reported physician classification of SSc and age 18 or older.
• Exclusion Criteria:
• • Patients not able to access or respond to questionnaires via the internet are excluded.