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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

IV Sodium THoisulfate for calcinosis in JDM

Researchers at the National Institute of Environmental Health Sciences (NIEHS) are conducting a study of Sodium Thiosulfate intravenous therapy to treat juvenile 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:

AID Clinical Trial: Abatacept In Juvenile Dermatomyositis

The Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 7 years old. Study participants must have moderately active disease despite treatment with prednisone and at least one other medication. Travel funds and compensation is available for study participants for five study visits after screening. PRINT A FLYER to discuss the trial with your doctor or CLICK HERE FOR MORE INFORMATION. You may also contact Hassan Awal at hawal@mfa.gwu.edu or call (202) 741-2389.

Experimental Treatment Study: H.P. Acthar Gel (Cure JM Foundation)

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. For more information on the study, go to: https://clinicaltrials.gov/ct2/show/NCT02245841.

To enroll or for more details, contact Lisa Rittwage, BSN, RN, at (216) 444-4659 or rittwal@ccf.org.

Sodium Thiosulfate for Calcinosis Trial

Currently enrolling children and adults with stable JDM and DM at the National Institutes of Health (NIH) Clinical Center in Bethesda, MD. Study participants must have moderate to severe calcium deposits in at least 2 limbs or the trunk (chest, abdomen, back), be 7 years of age or older, and weigh at least 26 kilograms (57.3 pounds). For more information, contact study coordinator Amanda Lynen at amanda.lynen@nih.gov or (301) 827.6736, or go to: https://clinicaltrials.gov/ct2/show/NCT03267277 .

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MORE INFORMATION

Lenabasum in Dermatomyositis (DETERMINE) Trial

Enrolling adults with JDM.
MORE INFORMATION

Tocilizumab

Enrolling adults with JDM.
MORE INFORMATION

A Study In Adults With Moderate To Severe Dermatomyositis

Enrolling adults with JDM or DM.
MORE INFORMATION

Belimumab in Idiopathic Inflammatory Myositis (BIM)

Multicnter. Enrolling adults with JDM or DM.
MORE INFORMATION

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 or the NIH. 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: Myorisk Study

Currently enrolling patients who have tested positive for Jo1 or other anti-synthetase autoantibodies, within 2 years of diagnosis. Fred Miller, MD is the Principal Investigator, and Lisa G. Rider, MD is the Associate Investigator on this study. Please call Meghana Vijaysimha, the study coordinator, for more information or to enroll. Meghana Vijaysimha can be reached directly at (301) 451-6031 or meghana.vijaysimha@nih.gov.
You can also enroll by calling (800) 411-1222.
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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.
MORE INFORMATION

Twin/Sibling Study

Twin/Sibling Study conducted by the National Institute of Environmental Health Sciences (NIEHS) in Bethesda, MD. This is a study for families with siblings or twins in which one sibling has developed an autoimmune disease (JDM, JPM, JIA, JSLE, and systemic sclerosis in children and their adult counterparts) and the other has not. Now enrolling patients within 5 years of diagnosis. You may enroll at your local doctor’s office, Bethesda, MD or in Research Triangle Park, NC. Siblings need to be of the same gender, within 5 years of age and without an autoimmune disease. There is no charge for study-related evaluations. To participate, please contact study coordinator Dr Nastaran Bayat at nastaran.bayat@nih.gov or (301) 451-2348.
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