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Patients take the lead: rare myositis study puts your voice first

NCT ID NCT07374107

Knowledge-focused Sponsor: Myositis International Health & Research Collaborative Alliance Foundation Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study asks 700 people with rare myositis diseases (and their caregivers) what research questions matter most to them. Through online surveys and forums, the goal is to create a patient-driven list of priorities to guide future studies and funding. No drugs or treatments are tested—this is about listening to patients to shape science.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help researchers focus on what matters most to patients with rare myositis diseases, potentially guiding future treatments and funding.
What could go wrong
This is an observational study that collects opinions, not a treatment trial. It will not directly test any drug or therapy, and its impact depends on whether researchers and funders act on the findings.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 700 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2025

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Adults and children living with an idiopathic inflammatory myopathy recruited through self-referral (prompted by clinic notices/ patient organization newsletters / /advocacy communities / social media / internet searches ) to provide perspectives on research priorities.

Ages

7 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

acquired idiopathic inflammatory myopathy antisynthetase syndrome dermatomyositis idiopathic inflammatory myopathy immune-mediated necrotizing myopathy inclusion body myositis juvenile dermatomyositis myositis disease Patient Participation polymyositis Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Anti-synthetase syndrome Dermatomyositis Dermatomyositis, juvenile IBM IIM Immune-mediated necrotizing myopathy Inclusion body myositis Inflammatory myopathy Juvenile dermatomyositis Juvenile myositis Myositis Polymyositis

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    1 site. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

  • Contact

    Email: •••••@•••••

Locations

  • MIHRA Foundation - This is a GLOBAL STUDY

    RECRUITING

    New Orleans, Louisiana, 70130, United States

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

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