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Observational Study of Adult and Juvenile Myositis

This observational study aims to understand more about myositis (an inflammatory muscle disease) in both children and adults. Researchers want to learn about its causes, how it affects the immune system, and related medical problems. You may be eligible if you have dermatomyositis, polymyositis, or a related condition, and are between 2 and 100 years old. Healthy individuals can also join as 'controls' for comparison. Participation involves a health history, physical exam, review of medical records, and blood and urine tests. Some participants may also choose to have additional evaluations like muscle strength tests or skin biopsies.

Study design
This is an observational study planning to enroll 1200 participants, including those with myositis and healthy controls. It is not testing a specific drug or intervention.
What's involved
You will undergo a complete history, physical examination, medical record review, and blood and urine tests. You may also choose to participate in an additional 1- to 5-day evaluation, which could include muscle strength testing, skin assessment, or MRI scans.
Compensation
Not stated in the trial record.
Follow-up
Your health will be assessed at enrollment and at each study visit.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT00017914

Adult and Juvenile Myositis

Recruiting
Not specifiedAges 2+Observational
National Institute of Environmental Health Sciences (NIEHS)
~1,200 participants
Updated 2026-08-17 on ClinicalTrials.gov

At a glance

Recruiting sites
2 of 4 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Physician Global Assessment Form
Measured over At enrollment and each study visit

Conditions

Dermatomyositis
Polymyositis
Inclusion Body Myositis

Explore related trials

DermatomyositisInclusion Body MyositisMyositisPolymyositis

Where it's being run

4 sites across 4 states
Georgia1
Maryland1
North Carolina1
Texas1

Study leadership

  • Lisa G Rider, M.D. · PRINCIPAL_INVESTIGATOR · National Institute of Environmental Health Sciences (NIEHS)

Who to contact

Lisa G Rider, M.D.
[email protected]
(301) 451-6272
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Inflammatory and non-inflammatory myopathies:
Mimicking and related skin disorders:
Disorders of the complications of myositis (including interstitial lung disease, calcifying disorders, cardiomyopathies, etc.):
Overlapping autoimmune diseases that may be associated with myositis
Patients with muscle and/or skin inflammation and documented environmental exposures:
Patients with myositis or complications of myositis and suspected genetic disorders:
Patients with undifferentiated connective tissue disease
Patients with signs or symptoms of myositis (such as weakness, skin rashes, interstitial lung disease) or laboratory abnormalities (such as elevated CK or muscle biopsy with myopathic features) who do not have an established diagnosis of myositis for them to be evaluated to establish a diagnosis

Exclusion

Email, written, or telephone communications with prospective subjects
Review of existing medical records
Review of existing imaging studies
Review of existing photographs or videos
Review of existing pathology specimens/reports from a specimen obtained for diagnostic purposes

What this trial measures

  • Physician Global Assessment FormAt enrollment and each study visit

    1- A secure internet accessible IMACS Outcomes Data Repository of core set disease activity, damage and quality of life measures has been established for adult and juvenile myositis patients as part of IMACS. 2- Compare the clinical and immunopathogenic features of childhood and adult IIM to determine the differences of IIM in these two populations referred to NIH 3- investigate the immunopathogenesis and immunogenetics of IIM.