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Studies in the Natural History & Pathogenesis of Childhood Idiopathic Inflammatory Myopathies

Physicians' Information

Rationale
StudentThis study will evaluate subjects with childhood-onset Myositis to learn more about their cause and the immune system changes and medical problems associated with them. A secondary goal is to better define the complications of illness and how to best assess these. Myositis is an inflammatory muscle disease that can damage muscles and other organs, resulting in significant disability. The hope is that such studies will allow for better treatments or even the prevention of these diseases.

Purpose
To better understand which genes might be causing childhood onset Myositis , and what factors (laboratory-based and clinical) predict disease outcomes. Blood and urine will be collected from all subjects, and all subjects or their parents will be asked to complete questionnaires about their medical history. Different tests may also be performed to assess how the illness is affecting different parts of the body.

Overview of the Study

  • The goal of the study is to understand the genetic factors that may result in childhood onset Myositis , to define new outcome measures and better define outcomes for these diseases.
  • Subjects enroll at the NIH Clinical Center in Bethesda, Maryland.
  • A letter from a referring physician is required.
  • All subjects will have a baseline evaluation; selected subjects may return for 1 or 2 follow-up visits.
  • Medical records, questionnaires and blood and urine samples will be collected at enrollment.
  • Other testing is performed on a selective basis, and may include muscle strength and physical function testing, skin evaluation, swallowing and speech evaluation, heart and lung studies, magnetic resonance imaging of muscles, aerobic exercise testing, as well as muscle biopsy.

Eligibility
Meet probable or definite criteria for IIM by Bohan and Peter, and age less than 18 years at diagnosis of an IIM.

Ability of Patient or parent/guardian to give informed consent to all or part of the study after full information has been provided.

Normal healthy volunteers, who do not have an autoimmune or inflammatory disease, and who are matched to enrolled patients, are also eligible to enroll in the study.

Treatment Intervention: None

Disclaimer
This abstract is intended to give a brief overview of this study. To help determine whether the trial is appropriate for an individual, selected major eligibility criteria are listed above. To obtain more details related to trial eligibility and the treatment plan, please see the Health Professional abstract of this clinical trial. Information about other ongoing clinical trials is available from the NIH Clinical Research Study Web site (http://clinicalstudies.info.nih.gov/) Exit NIEHS.

Study Contacts

  Frederick W. Miller, M.D., Ph.D.
Tel (301) 451-6273
Fax (301) 451-5585
millerf@niehs.nih.gov
National Institute of Environmental Health Sciences
NIH 10, Room 4-2352
10 Center Drive, MSC 1301
Bethesda, Maryland 20892-1301
  Lisa G. Rider, M.D.
Tel (301) 451-6272 or 1-888-271-3207
Fax (301) 451-5588
riderl@niehs.nih.gov
National Institute of Environmental Health Sciences
NIH 10, Room 4-2332
10 Center Drive, MSC 1308
Bethesda, Maryland 20892-1301

Study Sites and Contacts
Subjects may be enrolled at the NIH Clinical Center, 9000 Rockville Pike, Bethesda, MD, 20892.

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Last Reviewed: October 30, 2008