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The Myositis Registry and Repository - 2011

IRB Number: 11148

October 20, 2011

Institutional Review Board, Hospital for Special Surgery

The safety of our participants is our top priority. The trial/study is approved and periodically reviewed by the Institutional Review Board (IRB), which includes doctors, administrators, ethicists, and members of the general public. The safety of clinical trials is reviewed by the U.S. Food and Drug Administration.

Before enrolling in a clinical trial or research study, the investigator will explain the purpose of the trial/study, its expected benefits, any possible risks or side effects, and what your role will be. If you want to join the trial/study, you must sign informed consent documents. You can leave a trial/study at any time without penalty.

For further information, see Understanding Clinical Trials/Research Studies.

Principal Investigator

Stephen J. DiMartino, MD


Robert F. Spiera, MD
Jessica K. Gordon, MD
Uzunma Udeh, BA
Nina Paddu, BA
Elizabeth Soto-Cardona, BA
Teena Shetty, MD


The purpose of the Myositis Registry is to gather as much information as we can about as many patients as possible who have this rare condition.  This will facilitate investigators in developing a better understanding of its clinical features, pathobiology (the study of the biological changes in the body caused by disease), and genetic links. With this increased knowledge, investigators hope to identify the unmet needs of patients with myositis and develop new and better treatments to improve disease outcomes and quality of life.

Inclusion/Exclusion Criteria

• Patients diagnosed with myositis will be requested to enroll in the registry. Subjects will be of varying age, sex, ethnic background, and state of health.

• Patients who do not have myositis will not be eligible for the myositis registry. Subjects with mental disabilities that would seriously affect the individual’s ability to complete the questionnaire or provide consent will be excluded from the registry

Contact Information

Uzunma Udeh, BA