Help researchers find the cause and a cure for JM by volunteering for these important studies. Please contact info@curejm.org for further information.
Complete the Online PLAY Survey
This study uses an online questionnaire to learn how JDM affects physical activity in children and adults with JDM.
Who should participate? Anyone with a diagnosis of JDM who is 5-30 years old living in the USA or Canada. If you are younger than 18 years old, your parent or guardian will need to fill out the questionnaire for you.
We are also interested in having healthy siblings or friends without JDM of the same birth gender and close in age complete the questionnaire as well so we can study differences between the two groups.
Sun Protection Survey
Researchers at the Children’s Hospital at Montefiore are trying to find out more about sun protection in patients, age 4-21.
We invite you to complete this survey if:
- You are age 4-21 and have been diagnosed with juvenile dermatomyositis
- Your child is age 4-21 and has been diagnosed with juvenile dermatomyositis
The survey will take about 15 minutes.
Click this link to take the survey: https://redcap.link/8vjltcj1
Cabaletta Bio CAR-T trial
RESET-Myositis: Open-Label Study to Evaluate the Safety and Efficacy of CABA-201 in Subjects with Active Idiopathic Inflammatory Myopathy
Idiopathic inflammatory myopathies (IIMs, or myositis) are a group of rare autoimmune diseases characterized by inflammation and muscle weakness. Though the cause of IIM is not well understood, some subtypes of IIM, including dermatomyositis (DM), anti-synthetase syndrome (ASyS), and immune-mediated necrotizing myopathy (IMNM), are thought to involve B cells that cause the body to attack different tissues in the body. This study is being conducted to evaluate the safety and efficacy of an investigational cell therapy, CABA-201, that can be given to patients with DM, ASyS, and IMNM who have active disease. A single dose of CABA-201 in combination with cyclophosphamide (CY) and fludarabine (FLU) will be evaluated.
Are you wondering if this clinical trial is right for you? To find out more, contact the study team using the information below.
Phone: +1-267-759-3100
Email: clinicaltrials@cabalettabio.com
Collating the Voice of People living with Autoimmune Diseases (CoVAD3) Survey
The CoVAD team comprises a group of physician-scientists undertaking a project to determine patients’ subjective well-being. By assessing these, we aim to understand your life holistically including factors influencing life satisfaction. These answers will help physicians understand the healthcare interventions needed to improve the lives of people living with chronic diseases.
If you are over 18 years of age, we would be grateful for fifteen minutes of your precious time to respond to this survey. You may fill out the survey at once or exit and re-enter the survey to complete it in parts at your convenience.
Both patients with autoimmune or rheumatic disease and healthy individuals can take this survey. If you are a patient with an autoimmune or rheumatic disease, we encourage you to ask the healthy members of your family and friends to take this survey as well.
The data collected from this survey will be used for publication in peer-reviewed journals.
This survey was approved by the Institutional Review Board (IRB) or ethics committee (SGPGIMS, Lucknow) which governs the appropriateness of the conduct of this survey. If you have any concerns or questions, please write to covadstudy@gmail.com or Dr. L Gupta MD, DM at drlatikagupta@gmail.com or Dr. V Agarwal MD, DM at vikasagr@yahoo.com.
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.
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.
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
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://clinicaltrials.gov/study/NCT01276470
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
Efgartigimod trial: Accepting Juvenile Onset
Age:
18+
Qualifications:
- Agrees to use contraceptive measures consistent with local regulations and women of childbearing potential must have a negative urine pregnancy test at baseline before receiving the investigational medicinal product
- Has completed trial ARGX-113-2007
- Being capable of providing signed informed consent and complying with protocol requirements
Study Details:
The purpose of this study is to measure the long-term safety and tolerability of efgartigimod PH20 SC in adult participants with IIM who previously participated in ARGX-113-2007. Secondary objectives include efficacy measures of efgartigimod PH20 SC in participants with IIM.
Enrollment: By Invitation
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 #
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.
