Recruiting

Observational Study

Sponsor:

Myositis International Health & Research Collaborative Alliance Foundation

Code:

NCT07374107

Conditions

IBM

IIM

Myositis

Inflammatory Myopathy

Dermatomyositis

Eligibility Criteria

Sex: All

Age: 7+

Healthy Volunteers: Not accepted

Interventions

No intervention - qualitative and mixed methods investigations

Study Details

Brief summary:

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

IBM

IIM

Myositis

Inflammatory Myopathy

Dermatomyositis

Study ID

NCT07374107

Start date

Jun 25, 2025

Status verified date

Jan, 2026

Completion date

Dec, 2030

Anticipated

Primary completion date

Dec, 2030

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 7+

Healthy Volunteers: Not accepted

Inclusion Criteria:

  • 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 https://mihrafoundation.org/mihra-programs/mihra-patient-contact-registry/

Exclusion Criteria:

  • Under the age of 7 years old
  • Do not have a diagnosis of an inflammatory myopathy

Study Design

Enrollment

700 participants

Anticipated

Interventions and Outcome Measures

Arms

Individuals living with a myositis disease

Adults and children with a clinician diagnosis of an inflammatory myopathy (and optionally caregivers/partners) will express their priorities and insights regarding regarding research priorities across myositis diseases.

Interventions

No intervention - qualitative and mixed methods investigations

No Intervention

Primary outcome measure

  • Patient-voiced research priority topics [ Time Frame: At completion of narrative, focus group forum or survey, up to 90 minute ]

Central Contacts and Locations

Central contacts

Lesley Ann Saketkoo, MD/MPH

504 822 6653info@MiHRAfoundation.org

Barbara Shafranski

504 822 6653info@MIHRAfoundation.org

Locations

MIHRA Foundation - This is a GLOBAL STUDY

Recruiting

New Orleans, Louisiana, United States, 70130

Contacts

Lesley Ann Saketkoo, MD, MPH

504-822-6653info@MIHRAfoundation.org

Barbara Shafranski

504 822 6653info@MIHRAfoundation.org

More Information

Sponsor

Myositis International Health & Research Collaborative Alliance Foundation

Last update posted

Jan 28, 2026

Last verified

Jan, 2026

Keywords

  • myositis
  • rare diseases
  • patient priorities
  • patient engagement
  • patient initiated
  • patient research partners
  • qualitative research
  • mixed methods research
  • research priorities

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Myositis International Health & Research Collaborative Alliance Foundation on 2026-01-28.