Achieving Equity in Clinical Trials Working Group

Summary of current project(s) of working group:

The goal of this working group is to build community and improve equity in scleroderma clinical trials with the following main objectives:

1.  Improve enrolment of culturally and ethnically diverse populations through the development of patient educational resources describing clinical trial basics and available SCTC studies and training opportunities.
2. Explore current systemic sclerosis clinical trial outcome measures and ensure the assessments are accurate and equitable for different populations.
3. Investigate how to improve power of clinical trials on a global scale considering demographic population differences across various countries.

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Progress to date for working group:

• Working group application accepted
• Preliminary discussions/virtual meetings held to develop ideas for projects listed below:
  • Development of patient educational resources highlighting clinical trial basics through a scleroderma lens that will be available for all SCTC members on our website.
  • Examine current outcome measures (i.e. nailfold capillaroscopy) to assess accuracy in certain global populations and diverse ethnic groups accounting for differences in skin pigmentation worldwide.
  • Explore ways to improve power of Systemic Sclerosis clinical trials on a global scale based on clinical characteristics such as autoantibody status.

Next steps:

• Hold first official SCTC WG meeting after AGM in October 2025
• Create smaller groups for projects listed above to do literature review and explore the SCTC database regarding scleroderma outcome measures in global populations.
• Review existing educational resources regarding clinical trials in other rheumatic diseases and create focus groups to get feedback on newly created educational materials.

What are expected deliverables and timelines for grant/working group?

• Recruitment of more WG members at SCT AGM- October 2025.
• Complete drafts for 1-2 patient educational resources- December 2026.

Contact information for how can members get involved:

• Dr. Lauren Smith (Lauren.N.Smith2@medstar.net)
• Dr. Tracy Frech (Tracy.Frech@vumc.org)