Research Volunteers and Assistance Needed
Help researchers find the cause and a cure for JM by volunteering for these important studies:
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. Talk to your doctor about this trial or print out the materials below and show them to your doctor. Your doctor can enroll you or get more information by contacting Sirlekar Bullocks at sbullocks@mfa.gwu.edu or call (202) 750-0377.
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/
To enroll or for more details, contact Lisa Rittwage, BSN, RN, at (216) 444-4659 or rittwal@ccf.org.
Urgently Needed: Microbiome study (Seattle Children’s Hospital)
Currently enrolling children with JDM who are less than 14 years old. Study participants must enroll either before any treatment has started or be off of immunosuppression for 3+ months and flaring. Patients can now participate from any state, contact us for more information on how to participate from your home physician’s office. Please call (206) 987-2057.
Urgently Needed: Myorisk Study
Currently enrolling patients with lung disease or who have tested positive for Jo1 or other anti-synthetase autoantibodies. Fred Miller, MD is the Principal Investigator, and Lisa G. Rider, MD is the Associate Investigator on this study. Please call Deona Cooper, the study coordinator, for more information or to enroll. Deona Cooper can be reached directly at 301-451-7667 or Deona.cooper@nih.gov Please call or email SOON as enrollment ends in Spring 2016.
You can also enroll by calling (800) 411-1222.
More Information
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.
Click here to register now.
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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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. Please call (800) 411-1222.
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