Complete an online survey to help our researchers better understand juvenile myositis and its effect on JM patients. Most surveys only take 10 to 15 minutes to complete, but the information researchers receive is invaluable.
- PLAY Survey
- Sun Protection Survey
- Collating the Voice of People living with Autoimmune Diseases (CoVAD3)
- Telemedicine Survey
- Impact of COVID-19 on JM Patients
- Cure JM Patient Registration
Please contact ashley.renfrow@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
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.
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
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.
