About The Study

Expand the links below for more information about this study.

Why is this study being done?

We would like to better understand how juvenile dermatomyositis (JDM) influences a person’s ability to participate in physical activities. We would also like to see if any differences exist between people with JDM and their siblings who do NOT have JDM. This information will help us understand JDM better.

Why should you take part in this study?

• It will provide researchers with valuable information about JDM and how it affects people’s ability to participate in physical activities.  
• It will provide researchers with information about fatigue and how it affects people with JDM.
• It will give physicians a better understanding of JDM.
• It could help you (or your child) and the thousands of other people who suffer from JDM by helping researchers learn how to approach and develop new and better treatments for JDM.

Who qualifies for this study?

• To qualify for this study you must belong to at least one of the following groups:

1. Be a parent/legal guardian of at least 2 children: one with JDM and one without JDM (“healthy sibling”).
2. Be an adult with JDM and have a healthy sibling.
3. Be a parent/legal guardian of a child with JDM who does not have a "healthy sibling" OR be an adult with JDM who does not have a "healthy sibling".

• You or your child must also:
  • Be able to read and understand English.
  • Have access to the Internet.
  • Fit one of the following age categories of JDM:
    
    1. Be a parent of a child who has JDM who is between the ages of 5-17 years of age. The child cannot have any other autoimmune diseases or diseases that affect their muscles, other than JDM. 
       OR
    2. Be an adult with JDM who is between the ages of 18-30 years of age. You cannot have any other autoimmune diseases or diseases that affect your muscles, other than JDM. 
  • The diagnosis of JDM (for you or your child) must have been made while you or your child were living in the USA or Canada.
  • You must currently live in the USA or Canada.

• We are also interested in “healthy” siblings of people with JDM:
  
  • Siblings also need to live in the USA or Canada.
  • Siblings need to be between the ages of 5-30 years old. 
  • If possible, it would be best if the "healthy" sibling is of the same gender as the person with JDM, but it is not required.
  • Healthy siblings CANNOT have JDM or other autoimmune or muscle diseases.
  • Siblings can be twins, full, half, step, foster, or adopted.
  • If there are multiple siblings, please choose the sibling who is closest in age and of the same gender (if possible) as your child with JDM, or to yourself if you are an adult with JDM.

What does the study entail?

• If you qualify to participate, we will ask you to complete an online questionnaire that will ask about fatigue and physical activity. If you or your child has JDM, the questionnaire will ask questions about JDM disease severity.
• For people with JDM or their siblings who are ages 5-17 years old, a parent or guardian will need to complete the questionnaire for them.
• Adults ages 18-30 years old with JDM and their adult healthy siblings can complete the questionnaire for themselves.

What happens if I want to participate?

You must meet all the criteria above under the section “Who Qualifies to Participate?” in order to participate. Parents of children with JDM and their healthy siblings (5-17 years old) or adults with JDM or their adult siblings (18-30 years old) will be asked to complete an online questionnaire. This questionnaire will ask questions about where you live, your family, medical history, fatigue levels, and ability to participate in physical activity. If you qualify and would like to participate, please follow the link at the bottom of this page.

How much time will it take?

We expect that you will be in this research study for less than an hour for each questionnaire.

If I begin the study, how long do I have to complete the questionnaire?

You will have 1 week (7 days) to complete each questionnaire. We will ask for an email address we can use to remind you to finish the questionnaire if you have not finished it within a week. We will not use your email for any other purpose. We will remove your email address from our records once you have completed the questionnaire. If you do not finish the questionnaire within 1 week, your questionnaire will be locked and you will not be able to access it further.

What do I get for participating in the study?

This information will be used to better understand JDM and how we can develop treatments for JDM. There is no monetary compensation for participating in this study.

Who can I contact for more information?

Please email jdm@gwu.edu with any questions.