Testing whether patients and researchers presenting side-by-side improves communication of scleroderma research to patients

Randomized controlled trial to evaluate patient and researcher co-presentation of research results: the scleroderma patient-centered intervention network – patients alongside investigators in research-sharing (SPIN-PAIRS) trial

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN12805381

Enrollment

116

Registered

2025-08-04

Start date

2025-11-22

Completion date

Unknown

Last updated

2025-12-01

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Patient and researcher co-presentation of research results compared to researcher-alone presentation among people with systemic sclerosis. Other

Interventions

This will be a mixed-method study with (1) a two-arm parallel-group randomized controlled trial (RCT) embedded in a 90-minute virtual research event and (2) interviews with patient and researcher co-p

5 minutes each for welcoming and closing). Participants will not be aware that they are being randomized or that there are separate events with different presentation formats occurring simultaneously.

Eligibility

Sex/Gender

All

Age

18 Years to 100 Years

Inclusion criteria

Inclusion criteria: 1. Adults aged 18 years or older 2. Diagnosed with systemic sclerosis by a physician

Exclusion criteria

Exclusion criteria: Not meeting the key inclusion criteria

Design outcomes

Primary

Measure	Time frame
Participant ratings of presentation (1) information completeness, (2) perceived understandability, (3) relevance to patients, and (4) trust in the research findings, collected immediately from participants after each presentation using Zoom’s poll feature at one timepoint. Response options for all items will be on a 0 to 10 scale (0 = strongly disagree to 10 = strongly agree).	—

Secondary

Measure	Time frame
1. Subgroup analyses of all primary outcomes by age (18 to 44 years, 45 to 64 years, 65 years or older), gender (women, men, other if sufficient number of participants), race or ethnicity (White, other), country (Canada, France, United States, other), education level (=12 years, >12 years), and health literacy (HLS19-Q12 =66.67 = sufficient or excellent, HLS19-Q12 <66.67 = inadequate or problematic). 2. Qualitative interviews with patient and researcher presenters, separately, and with event attendees to obtain perspectives to help us better understand and explain trial results and obtain information to improve and optimize co-presentation implementation.	—

Measure

Time frame

1. Subgroup analyses of all primary outcomes by age (18 to 44 years, 45 to 64 years, 65 years or older), gender (women, men, other if sufficient number of participants), race or ethnicity (White, other), country (Canada, France, United States, other), education level (=12 years, >12 years), and health literacy (HLS19-Q12 =66.67 = sufficient or excellent, HLS19-Q12 <66.67 = inadequate or problematic). 2. Qualitative interviews with patient and researcher presenters, separately, and with event attendees to obtain perspectives to help us better understand and explain trial results and obtain information to improve and optimize co-presentation implementation.

—

Countries

Canada

Contacts

Public ContactBrett Thombs

brett.thombs@mcgill.ca+1 (514) 340-8222

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026