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.
- Survey on Smoking, Vaping, and Nicotine Use
- Exercise Survey
- 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
- Help Shape the Future of Myositis Research
Please contact james.tealy@curejm.org for further information.
Research Survey on Smoking, Vaping, and Nicotine Use
There has been limited research on smoking, vaping, and nicotine use among patients seen in pediatric rheumatology practices. A new research study led by Dr. Patricia Hoffman, a pediatric rheumatology fellow at Hospital for Special Surgery (HSS), aims to better understand these experiences. The study’s Principal Investigator is Dr. Lisa Mandl.
If you or your child are 15 to 22 years old and have been seen by a pediatric rheumatology provider within the past five years, you may be eligible to participate.
Participation involves completing a one-time online survey. You do not need to use tobacco, vape, or nicotine products to take part.
Please scan the flyer’s QR code to learn more and access the survey. At the end of the survey, participants will also find a link to the CDC’s educational resources on the health effects of smoking, vaping, and nicotine use.
Take the survey HERE
Exercise Survey
Please scan the flyer’s QR code for more information and to complete a one-time online survey. You do not have to use tobacco or nicotine yourself to participate!
At the end of the survey, there is a link to the CDC’s information page on the health effects of smoking/vaping and nicotine use.
Researchers at BC Children’s Hospital and the University of British Columbia are inviting patients with juvenile idiopathic inflammatory myositis (JIIM) and their parents to share their experiences with physical activity and exercise advice. This short questionnaire study aims to improve how healthcare providers support physical activity for JM patients.
Who can participate:
• Any caregiver or patient
• Of any age
• In any country
Study runs October 20, 2025 – February 28, 2026.
To learn more or participate, click here and scan the QR code in the flyer.
Take the survey HERE
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.
Survey: Help Shape the Future of Myositis Research
The Myositis International Health and Research Collaborative Alliance (MIHRA) is seeking input from parents, patients, and clinicians to identify the most important data needed to advance myositis research.
Your feedback will help guide future research priorities and ensure that the most relevant and impactful data is collected. Participation is completely voluntary, and your insights will be invaluable in shaping the future of myositis research.
The survey takes just 5-10 minutes to complete.
Please take a moment to share your input:
https://tulane.co1.qualtrics.com/jfe/form/SV_eaL8Sb0O5zAAD3w
Thank you for your time and contribution!
