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Research Volunteers and Assistance Needed

Help researchers find the cause and a cure for JM by volunteering for these important studies. Questions? Contact

URGENTLY NEEDED: Sodium Thiosulfate for Treatment of Calcinosis Associated With Juvenile and Adult Dermatomyositis

Researchers at the National Institute of Environmental Health Sciences (NIEHS) are conducting a study of Sodium Thiosulfate intravenous therapy to treat juvenile dermatomyositis and adult dermatomyositis (NCT03267277).

All patients will receive the medication sodium thiosulfate for 10 weeks in this 72-week study at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland.  There is no charge for treatments or testing/evaluations.  Transportation within the United States and compensation are provided.

Patients must be a minimum of 7 years old and weigh at least 26 kilograms (57.3 pounds). They must have moderate to severe calcium deposits in the torso or in at least 2 limbs, with no bone fractures in the year prior to enrollment. 

Eligible participants will have five visits at the NIH Clinical Center in Bethesda, Maryland, following screening for eligibility, each lasting at approximately one week.  There is also a 10-week inpatient stay to provide the study medication, consisting of intravenous infusions of sodium thiosulfate 3 times a week.  Study visits involve medical history and physical examinations, blood and urine tests, muscle strength and functional tests, questionnaires, and other diagnostic/imaging studies.

For more information:

Urgently Needed: Myorisk Study

Currently enrolling patients who have tested positive for Jo1 or other anti-synthetase autoantibodies, within 2 years of diagnosis. Adam Schiffenbauer, MD is the Principal Investigator, and Lisa G. Rider, MD is the Associate Investigator on this study. Please call Nastaran Bayat, the study coordinator, for more information or to enroll. Nastaran Bayat can be reached directly at (301) 451-2348 or nastaran.bayat@nih.gov.
You can also enroll by calling (800) 411-1222.
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Experimental Treatment Study: H.P. Acthar Gel

Currently enrolling patients with Juvenile Dermatomyositis who are 18 years of age and older, as well as patients with the adult form of Dermatomyositis. Study participants must have refractory cutaneous symptoms, meaning that skin manifestations (calcinosis, rash, etc.) do not respond to treatment of steroids plus one other medication, such as methotrexate or IVIG. The Principal Investigator is Anthony Fernandez, MD, PhD at the Cleveland Clinic.
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To enroll or for more details, contact Lisa Rittwage, BSN, RN, at (216) 444-4659 or rittwal@ccf.org.

Adult and Juvenile Myositis

This study will evaluate subjects with adult- and childhood-onset myositis to learn more about their cause and the immune system changes and medical problems associated with them. Children or adults with polymyositis or dermatomyositis or a related condition may be evaluated under this study. Healthy children or adults will also be enrolled as "controls," for comparison of test results. All patients will undergo a complete history (including questionnaires) and physical examination, review of medical records, and blood and urine tests. Patients may then choose to participate in an additional 1- to 5-day evaluation, All patients may have only a one-time evaluation or may return for one follow-up evaluations (either the 1-day or 3- to 5-day evaluation) over a 1-year period. The Principal Investigator is Lisa G Rider, M.D. National Institute of Environmental Health Sciences (NIEHS).
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To enroll or for more details, contact Nastaran Bayat, protocol coordinator at nastaran.bayat@nih.gov, or (301) 451-2348

Tocilizumab

Enrolling adults with JDM.
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A Study In Adults With Moderate To Severe Dermatomyositis

Enrolling adults with JDM or DM.
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JDM Dental Study

Currently enrolling children with JDM who are between 2 and 18-years old to participate in a research study at Seattle Children's Hospital. Study participants may be on or off immunosuppressive treatment, must have documented muscle and skin disease, and must have a healthy sibling who is willing to participate as a healthy control. Newly diagnosed patients are particularly helpful. Patients from any state may be enrolled, please contact us for more information. Please call (206) 987-2057 or email .

Urgently Needed: Pediatric Identical twins

Sets of twins are needed where one twin has Juvenile Dermatomyositis (JDM) and the other twin does not. For further information please call (312) 227-6277. Study conducted at the Cure JM Program of Excellence in JM Research at Stanley Manne Children's Research Institute, affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL. (PLEASE NOTE: The NIEHS in Bethesda, MD is also conducting a twin/sibling study. Scroll down for details regarding that study.)

Patient Registration

The Cure JM Foundation Patient Registry was created to help us build a database of Juvenile Dermatomyositis and Juvenile Polymyositis sufferers. This information will be used as part of a demographic survey to determine if there are clusters of children affected by JM in the same geographic area. The information you provide will be used exclusively for research, and will not be shared with any other organization or business not connected with this research. In addition, parents of JM patients (or adult JM patients) can also use the registration process to sign up for our Family Support Network (FSN) and Team JM (the Cure JM fundraising team). Those who register and elect to join the FSN will receive a Welcome Kit and periodic Cure JM updates.
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Premature Atherosclerosis in JDM

Study of Premature Atherosclerosis in Juvenile Dermatomyositis conducted at the Children's Hospital at Montefiore, Bronx, NY. Currently enrolling patients age 2-21 with a diagnosis of JDM. To be eligible patients cannot be currently using medications that alter lipid metabolism or endothelial function (including lipid lowering agents), be a smoker or have another chronic illness (other than JDM), Please call (718) 696-2405.
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