Research Volunteers and Assistance Needed

Three Research Volunteers

Help researchers find the cause and a cure for JM by volunteering for these important studies. Please contact info@curejm.org for further information.


Patient Registration

Cure JM Foundation created a Patient Registry to help build a database of Juvenile Dermatomyositis and Juvenile Polymyositis patients. Please join today and help propel research toward JM breakthroughs and, ultimately, a cure.

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Will Your Child Benefit From Telemedicine?

Parents and patients are requested to share their opinion on juvenile dermatomyositis telemedicine visits.

The purpose of the survey is to better understand the benefits and challenges of receiving JDM care via telemedicine.

Take the Survey


Please Complete This Survey on COVID-19’s Impact on JM Patients

Researchers at the Children’s Hospital at Montefiore, led by Dr. Dawn Wahezi, are trying to discover more about how the pandemic has affected patients.

Please complete this survey if you are a:

  • Parent of a JM patient who is 21 years old or younger
  • Patient age 18-21

Take the Survey


Urgently Needed: Myorisk Study

Currently enrolling patients with juvenile dermatomyositis or polymyositis who have tested positive for Jo1 or other anti-synthetase autoantibodies within the first two years of diagnosis. For the MYORISK study, patients and controls can enroll from home without traveling to Bethesda. 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.
Download a Flyer
Click Here for More Information


Healthy Friends and Family Members Needed

Doctors at the National Institutes of Health (NIH) are researching to better understand the environmental risk factors that may result in myositis. We are looking for healthy adults and children willing to participate in the MYORISK Study as control participants.
Your participation will include the following:
• Completing a single clinic visit
• Completing surveys
• Sending in a house dust sample
• Providing a blood sample
Compensation is available.

Contact: 800.411.1222 • TYY: 866.411.1010 • https://www.niehs.nih.gov/research/clinical/index.cfm


Wanted: Patients with Juvenile Dermatomyositis, Adult Dermatomyositis, or Lupus

Age:
15+

Qualifications:
Either within 12 months of exposure to the COVID-19 infection or 2nd dose of vaccine OR patients who have had no exposure to COVID-19 infection or vaccine.

Study Details:
Patients need to be seen at the NIH Clinical Center in Bethesda, Maryland, and return 12 months later for re-evaluation. Patients we have seen previously in our NIH research studies are of great interest for this study.

The study requires history and physical, clinical disease assessment, questionnaires, blood work where many tubes are drawn, and an EKG which can be completed on the first day. For interested patients, a blood vessel reactivity study can be scheduled, which requires a second day for the visit.

Also of interest is enrolling healthy control subjects with no exposure to COVID-19 infection or vaccine unrelated to patients with these autoimmune conditions.

Contact:
Office of Patient Recruitment
800.411.1222 800.877.8339 TTY/ASII
Email: prpl@cc.nih.gov
Ask for study #000207-AR


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 ten 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, and 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 at least two limbs, with no bone fractures in the year before enrollment.

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

For more information:


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.
Click Here for More Information

To enroll or for more details, contact Lisa Rittwage, BSN, RN, at 216.444.4659 or rittwal@ccf.org.


Tocilizumab

Enrolling adults with JDM.
Click Here for More Information.


A Study In Adults With Moderate To Severe Dermatomyositis

Enrolling adults with JDM or DM.
Click Here for More Information


Premature Atherosclerosis in Juvenile Dermatomyositis

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

Children with juvenile dermatomyositis (JDM) may be at increased risk of early heart disease due to risk factors including high cholesterol, abnormalities with blood sugar, high blood pressure, limited physical activity, chronic inflammation and the medications that they take. In addition, patients with JDM often have inflammation in their blood vessels which may cause the blood vessels to function improperly. Researchers have found that dysfunctional blood vessels may be one of the first signs of early heart disease. Although it is rare, involvement of the heart and heart attacks have been reported as causes of death in cases of children and adults with dermatomyositis.

This study will use a safe ultrasound technique to examine the function of the blood vessels in children with JDM. Risk factors will be examined to determine if we can identify which ones may cause the greatest risk of early heart disease in these children. With the support of Cure JM and the CARRA network, we plan to perform an additional study to examine these risk factors in a large population of children with JDM and how we can prevent heart disease in these young children.

The long-term goal of our research is to identify which patients with JDM may be at the highest risk of early heart disease and to determine if medications and dietary changes may help to prevent the development of early heart disease. In addition, the information gained from this study regarding the association between various risk factors and early heart disease increases physician awareness and monitoring of these risk factors in children with JDM. Finally, by demonstrating this safe ultrasound technique may be used as a measure of the very first signs of heart disease in children with JDM, we plan to provide physicians with a screening tool for pediatric patients with identifiable risk factors.

Study details:

Location

This study will be conducted at the Children’s Hospital at Montefiore, Bronx, New York.

Principal Investigator

Dr. Dawn Wahezi, MD, MS

Contact #

718.696.2405

Eligible Participants

Children, adolescents, and young adults ages 2-21 with a diagnosis of JDM.

Exclusion Criteria

(1) diagnosis of a chronic illness other than JDM
(2) current use of medications that alter lipid metabolism or endothelial function, including lipid-lowering agents
(3) currently smoking

Endopat Testing

The patient sits in a reclining chair propped in a comfortable position with their hands at heart level. The Endo-PAT probe is placed gently on the fingertip, and flexible tubing connects the finger probe to the machine. Baseline measurements are recorded over five minutes. Then a blood pressure cuff is inflated for five minutes, followed by rapid deflation. Measurements will be recorded for at least five minutes after deflation. The patient’s other arm serves as a control assessment. Prior evaluation of discomfort associated with this procedure resulted in a pain score of 1 on the Wong-Baker Faces Pain Scale.

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