Actively Recruiting
MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)
Led by Myositis International Health & Research Collaborative Alliance Foundation · Updated on 2026-01-28
700
Participants Needed
1
Research Sites
283 weeks
Total Duration
On this page
Sponsors
M
Myositis International Health & Research Collaborative Alliance Foundation
Lead Sponsor
M
MIHRA Patient Advisory
Collaborating Sponsor
AI-Summary
What this Trial Is About
Myositis diseases are each rare diseases. As in other rare diseases, people living with myositis diseases face physical and psychosocial challenges that may not be recognized in current research priorities. The PRISMS study is a global investigation that collects patient perspectives through (mostly online) methods of open-ended questions, community forums and survey to identify the most pressing research concerns as identified by patients. Findings will be analyzed to create a patient-voiced set of research priorities that can guide the direction of research and help inform funding decisions across myositis diseases. Potential participants can express interest via https://mihrafoundation.org/mihra-programs/mihra-patient-contact-registry/
CONDITIONS
Official Title
MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Ability to provide informed consent
- Have a clinician diagnosis of an idiopathic inflammatory myopathy or be a care partner or parent of a person living with an idiopathic inflammatory myopathy
- Participants who may have signed up through the MIHRA Patient Contact Registry
You will not qualify if you...
- Under the age of 7 years old
- Do not have a diagnosis of an inflammatory myopathy
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
MIHRA Foundation - This is a GLOBAL STUDY
New Orleans, Louisiana, United States, 70130
Actively Recruiting
Research Team
L
Lesley Ann Saketkoo, MD/MPH
CONTACT
B
Barbara Shafranski
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here