Do you have juvenile dermatomyositis?
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Yes
No
Please enter your email address. This may be used to ask you any follow-up questions about your survey (in the case of missing answers). Your email address will not be shared or used for any other purposes. Your email address will be deleted from our records once the study is completed.
1.1 Are you participating in the matched sibling study?
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Yes
No
What is your zip code?
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When was your sibling with juvenile dermatomyositis diagnosed?
Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
Year?
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2023 2022 2021 2020 2019 2018 2017 2016 2015 2014 2013 2012 2011 2010 2009 2008 2007 2006 2005 2004 2003 2002 2001 2000
1.2 How old are you?
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18 19 20 21 22 23 24 25 26 27 28 29 30
1.3 What was your gender at birth?
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Male
Female
Intersex
1.4 What race/ethnicity best describes you? Check all that apply
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2.1 Have you EVER (at any time) or CURRENTLY (within the past 7 days) had any of the following? Check all that apply:
2.2 Have you been diagnosed with a health condition for which you have been hospitalized, needed to see a doctor regularly, or taken regular prescription medications? Please check all that apply:
Another muscle disease (please specify)
Another autoimmune disease (please specify)
2.3 Which best describes you currently (over the past 7 days)?
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Able to perform usual self-care activities (dressing, feeding, toileting), school activities, and play and hobby activities
Able to perform usual self-care activities and school activities, but is limited in play and hobby activities
Able to perform usual self-care activities, but is limited in school and play and hobby activities
Limited in the ability to perform self-care activities, school activities, and play and hobby activities
2.3a Which best describes you when your sibling's JDM was at its worst?
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Able to perform usual self-care activities (dressing, feeding, toileting), school activities, and play and hobby activities
Able to perform usual self-care activities and school activities, but is limited in play and hobby activities
Able to perform usual self-care activities, but is limited in school and play and hobby activities
Limited in the ability to perform self-care activities, school activities, and play and hobby activities
2.4 Do you currently experience muscle pain (in last 7 days)?
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Yes No
At its worst, how severe is the pain? Please use a 0-10 scale to report the pain where 0 means no pain and 10 means the worst pain possible
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0 1 2 3 4 5 6 7 8 9 10
How many times a day?
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1 2 3 4 5 6 7 8 9 10 10+
How many days a week?
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1 2 3 4 5 6 7
How long do these episodes last on average?
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Up to 1 minute Up to 5 minutes Up to 30 minutes Up to 1 hour Up to 3 hours Up to ½ of a day All day
Does the muscle pain prevent you from participating in play, exercise or other activities?
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Yes No
Does the pain get worse if you play, exercise or use your muscles?
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Yes No
Additional information (anything else we should know about your muscle pain?)
2.4a Did you experience muscle pain when your sibling's JDM was at its worst?
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Yes No
At its worst, how severe is the pain? Please use a 0-10 scale to report the pain where 0 means no pain and 10 means the worst pain possible
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0 1 2 3 4 5 6 7 8 9 10
How many times a day?
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1 2 3 4 5 6 7 8 9 10 10+
How many days a week?
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1 2 3 4 5 6 7
How long do these episodes last on average?
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Up to 1 minute Up to 5 minutes Up to 30 minutes Up to 1 hour Up to 3 hours Up to ½ of a day All day
Does the muscle pain prevent you from participating in play, exercise or other activities?
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Yes No
Does the pain get worse if you play, exercise or use their muscles?
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Yes No
Additional information (Anything else we should know about your muscle pain?)
2.5 Do you currently experience muscle cramps (in last 7 days)? Cramps are generally defined as a sudden involuntary contraction a muscle that is often painful, but lasts only a short time.
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Yes No
At its worst, how severe is the pain? Please use a 0-10 scale to report the pain where 0 means no pain and 10 means the worst pain possible:
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0 1 2 3 4 5 6 7 8 9 10
How many times a day?
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1 2 3 4 5 6 7 8 9 10 10+
How many days a week?
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1 2 3 4 5 6 7
How long do these episodes last on average?
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1-10 seconds 11-20 seconds 21-30 seconds 31-60 seconds Up to 2 minutes Up to 3 minutes Up to 4 minutes Up to 5 minutes More than 5 minutes
Do the cramps prevent you from participating in play, exercise or other activities?
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Yes No
Additional information (anything else we should know about your cramps?)
2.5a Did you experience muscle cramps when your sibling's JDM was at its worst? Cramps are generally defined as a sudden involuntary contraction a muscle that is often painful, but lasts only a short time.
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Yes No
At its worst, how severe is the pain? Please use a 0-10 scale to report the pain where 0 means no pain and 10 means the worst pain possible
* must provide value
0 1 2 3 4 5 6 7 8 9 10
How many times a day?
* must provide value
1 2 3 4 5 6 7 8 9 10 10+
How many days a week?
* must provide value
1 2 3 4 5 6 7
How long do these episodes last on average?
* must provide value
1-10 seconds 11-20 seconds 21-30 seconds 31-60 seconds Up to 2 minutes Up to 3 minutes Up to 4 minutes Up to 5 minutes More than 5 minutes
Do the cramps prevent you from participating in play, exercise or other activities?
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Yes No
Additional information (anything else we should know about your cramps?)
2.6 Do you currently experience joint contractures/tightness or muscle stiffness (in the past 7 days) that prevents you from fully moving a segment of an arm or leg?
* must provide value
Yes No
Does the stiffness prevent you from participating in play, exercise or other activities?
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Yes No
Additional information (anything else we should know about your muscle stiffness?
2.7 Did you experience joint contractures/tightness or muscle stiffness that prevented you from fully moving a segment of an arm or leg when your sibling's JDM was at it's worst?
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Yes No
Does the stiffness prevent you from participating in play, exercise or other activities?
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Yes No
Additional information (anything else we should know about your muscle stiffness?)
3.0 Over the past week , does fatigue (a feeling of a lack of energy) prevent you from participating in activities that require movement?
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Yes No
How many days a week does fatigue limit your activities?
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1 2 3 4 5 6 7
Additional information (anything else we should know about your fatigue?)
3.1 Do you feel like you have enough energy to do the things you want to do each day?
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Yes
No
Additional information
Additional information (anything else we should know about your energy levels?)
3.2 Does sleepiness prevent you from participating in activities you enjoy doing?
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Yes No
How many days a week does sleepiness limit your activities?
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1 2 3 4 5 6 7
Additional information (anything else we should know about your level of sleepiness?)
3.3 Do you have a hard time concentrating?
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Yes No
How many days a week do you have a hard time concentrating?
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1 2 3 4 5 6 7
Does your difficulty concentrating keep you from participating in daily activities?
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Yes No
Additional information (anything else we should know about your ability to concentrate?):
3.4 Do feelings of depression or sadness prevent you from doing activities you enjoy doing?
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Yes No
How many days a week does a feeling of depression or sadness limit your activities?
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1 2 3 4 5 6 7
Additional information (anything else we should know about your emotional state?)
3.5 Have you needed to adjust your sleeping habits due to feelings of fatigue?
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Yes No
Please check all that apply
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Additional information (anything else we should know about your sleeping habits?):
4.1a Which of the options below best describes your highest level of activity during the year before your sibling was diagnosed with JDM? Please check the one box that best describes your highest level activity for the indicated period of time.
1 Year before sibling's JDM diagnosis
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SEDENTARY, participating in the following activities: reading, coloring, listening to music, watching television, or playing video games, most days of the week.
LIGHTLY ACTIVE, participating in the following types of activities: walking, playing catch, caring for a pet animal, playing board games while standing, and helping with light house chores like setting the table.
MODERATELY ACTIVE, participating in the following types of activities: jumping jacks, playing on a playground, shooting baskets, dancing, walking upstairs, and house chores such as.
VIGOROUSLY ACTIVE, participating in the following types of activities: playing in an organized sporting match like soccer or basketball, jumping on a trampoline, jump-roping, playing tag, riding a bike at fast speed, long-distance running, or swimming.
COMPETITIVELY ACTIVE, participating in regular competitive sports with regular training up to several hours a day: competitive school or regional/national sports leagues, training toward regional/national competitions in a particular sport.
4.1b Which of the options below best describes your highest level of activity currently (over the last 7 days) compared to your sibling who has JDM? Please check the one box that best describes your highest level activity for the indicated period of time.
Currently (Last 7 Days), what best describes you?
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SEDENTARY, participating in the following activities: reading, coloring, listening to music, watching television, or playing video games, most days of the week.
LIGHTLY ACTIVE, participating in the following types of activities: walking, playing catch, caring for a pet animal, playing board games while standing, and helping with light house chores like setting the table.
MODERATELY ACTIVE, participating in the following types of activities: jumping jacks, playing on a playground, shooting baskets, dancing, walking upstairs, and house chores such as.
VIGOROUSLY ACTIVE, participating in the following types of activities: playing in an organized sporting match like soccer or basketball, jumping on a trampoline, jump-roping, playing tag, riding a bike at fast speed, long-distance running, or swimming.
COMPETITIVELY ACTIVE, participating in regular competitive sports with regular training up to several hours a day: competitive school or regional/national sports leagues, training toward regional/national competitions in a particular sport.
4.2 Over the past 7 days, on average, how far can you walk at a comfortable speed before needing to stop and rest?
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Less than 10 feet Across a room in your home (11-25 feet) Down a long hallway (26-50 feet) From a parking lot to a store (51-100 feet) Up to one-half of a city block (101-150 feet) Up to one full city block (151-300 feet) Up to two full city blocks (301-600 feet) Up to one-quarter of a mile (601-1,320 feet) Up to one-half of a mile (1,321-2,640 feet) Up to three-quarters of a mile (2,641-3,960 feet) Up to one mile (3,961-5,280 feet) More than one mile Additional information
Additional information (anything else we should know about your walking ability?)
4.3 In the one year before your sibling was diagnosed with JDM, how far could you walk at a comfortable speed before needing to stop and rest?
* must provide value
Less than 10 feet Across a room in your home (11-25 feet) Down a long hallway (26-50 feet) From a parking lot to a store (51-100 feet) Up to one-half of a city block (101-150 feet) Up to one full city block (151-300 feet) Up to two full city blocks (301-600 feet) Up to one-quarter of a mile (601-1,320 feet) Up to one-half of a mile (1,321-2,640 feet) Up to three-quarters of a mile (2,641-3,960 feet) Up to one mile (3,961-5,280 feet) More than one mile Additional information
Additional information (anything else we should know about your walking ability?)
4.4 Over the past 7 days, on average, how long can you play or participate in exercise or a sport before having to stop and rest?
* must provide value
1-5 minutes
6-10 minutes
11-15 minutes
16-20 minutes
21-30 minutes
31-45 minutes
46-60 minutes
More than 1 hour or longer
Additional information
Additional information (anything else we should know about your rest breaks?)
4.5 In the one year before your sibling was diagnosed with JDM, on average, how long could you play or participate in exercise or a sport before having to stop and rest (before diagnosis)?
* must provide value
1-5 minutes
6-10 minutes
11-15 minutes
16-20 minutes
21-30 minutes
31-45 minutes
46-60 minutes
More than 1 hour or longer
Additional information
Additional information (anything else we should know about your rest breaks?)
4.6 How would you characterize your highest level of participation in physical activities at the present time?
* must provide value
For fun or recreation only
As part of a school team
As part of a city team, club, or league
As part of a national team or association
4.7 How would you characterize your highest level of participation in physical activities in the one year before your sibling was diagnosed with JDM?
* must provide value
For fun or recreation only
As part of a school team
As part of a city team, club, or league
As part of a national team or association
4.8 Please indicate whether you PARTICIPATED in the following activities before your sibling was diagnosed with JDM, STOPPED participating in the following activities after your sibling was diagnosed with JDM, or CURRENTLY participating in any of the following activities. Please leave blank if you never participated in the activity. Check all that apply.
Please select the primary reasons (up to three) that you stopped participating in this activity
First choice
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You lost interest in the activity You do not have enough time anymore Lack of resources (e.g. not enough money) The sport or program was no longer available The people running the sport or activity could not make sufficient accommodations for you to participate You were too tired to keep participating You had a hard time catching your breath You experienced too much pain in your muscles (known as myalgia) You experienced too many muscle cramps (a sudden involuntary contraction of a muscle that is often painful, but lasts only a short time) You were too weak to continue participating You have too much muscle or joint stiffness to participate The activity required too much time in the sun You lacked endurance Other
Second Choice
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You lost interest in the activity You do not have enough time anymore Lack of resources (e.g. not enough money) The sport or program was no longer available The people running the sport or activity could not make sufficient accommodations for you to participate You were too tired to keep participating You had a hard time catching your breath You experienced too much pain in your muscles (known as myalgia) You experienced too many muscle cramps (a sudden involuntary contraction of a muscle that is often painful, but lasts only a short time) You were too weak to continue participating You have too much muscle or joint stiffness to participate The activity required too much time in the sun You lacked endurance Other
Third choice
* must provide value
You lost interest in the activity You do not have enough time anymore Lack of resources (e.g. not enough money) The sport or program was no longer available The people running the sport or activity could not make sufficient accommodations for you to participate You were too tired to keep participating You had a hard time catching your breath You experienced too much pain in your muscles (known as myalgia) You experienced too many muscle cramps (a sudden involuntary contraction of a muscle that is often painful, but lasts only a short time) You were too weak to continue participating You have too much muscle or joint stiffness to participate The activity required too much time in the sun You lacked endurance Other
4.9 In the past 7 days, have you had to modify your participation in play, exercise or sports?
* must provide value
Yes
No
In what ways has you modified your participation? Check all that apply:
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Additional information (anything else we should know about changes in your participation in play, exercise, or sports?)
5.1 What other symptoms, conditions, or factors prevent you from fully participating in meaningful daily activities?
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