Comparison of research dissemination tools to people living with systemic sclerosis (SSc
Conditions
Interventions
Current interventions as of 23/02/2026:
The investigators will use the multinational SPIN Cohort to conduct a series of RCTs to compare tools among people with systemic sclerosis, or scleroderma. Th
Sponsors
Jewish General Hospital
Eligibility
Sex/Gender
All
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: Current key inclusion criteria as of 23/02/2026: Eligible participants will include SPIN Cohort participants and others with systemic sclerosis (SSc; also known as scleroderma) who participated in previous SPIN-CLEAR trials or a SPIN online patient-oriented research event. 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 aged 18 years or older. _____ Previous key 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 aged 18 years or older.
Exclusion criteria
Exclusion criteria: Patients not able to access or respond to questionnaires via the internet
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Relevance of the research: "The information in this plain-language summary is relevant to me”. Response options = 0-10 numerical rating scales (0 = strongly disagree, 10 = strongly agree). Time frame: immediately post-intervention (intervention and outcomes in one login - outcomes approx.. 30 min after randomization). 2. Trustworthiness of the research: “I trust that the information in this plain-language summary is accurate and unbiased”. Response options = 0-10 numerical rating scales (0 = strongly disagree, 10 = strongly agree). Time frame: immediately post-intervention (intervention and outcomes in one login - outcomes approx.. 30 min after randomization) | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Information completeness: “The information presented in the plain-language summary told me everything I wanted to know about the study”. Response options = 0-10 numerical rating scales (0 = strongly disagree, 10 = strongly agree). Time frame: immediately post-intervention (intervention and outcomes in one login - outcomes approx. 30 min after randomization). 2. Understandability: “The information presented in the plain-language summary was easy to understand”. Response options = 0-10 numerical rating scales (0 = strongly disagree, 10 = strongly agree). Time frame: immediately post-intervention (intervention and outcomes in one login - outcomes approx. 30 min after randomization). 3. Pleased to have received results: “I am glad that I received the study results”. Response options = 0-10 numerical rating scales (0 = strongly disagree, 10 = strongly agree). Time frame: immediately post-intervention (intervention and outcomes in one login - outcomes approx. 30 min after randomization). 4. Intention to participate in future studies: “In the future, I would agree to participate in a similar study to the one presented in the plain-language summary”. Response options = 0-10 numerical rating scales (0 = strongly disagree, 10 = strongly agree). Time frame: immediately post-intervention (intervention and outcomes in one login - outcomes approx. 30 min after randomization). | — |
Countries
Canada
Contacts
Public ContactBrett Thombs
Outcome results
None listed