Are you answering all these questions about your child who doesn't 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.
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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 child with juvenile dermatomyositis diagnosed?
Month
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Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov, Dec
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 is your child who does not have JDM?
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0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18
1.3 What was your child's who does not have JDM gender at birth?
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Male
Female
Intersex
1.4 What race/ethnicity best describes your child who does not have JDM? Check all that apply
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2.1 Has your child who does not have JDM EVER (at any time) or CURRENTLY (within the past 7 days) had any of the following problems? Check all that apply:
Any other health problems?
2.2 Has your child who does not have JDM been diagnosed with a health condition for which he/she has been hospitalized, needed to see a doctor regularly, or taken regular prescription medications? Check all that apply:
Another muscle disease (please specify)
Another autoimmune disease (please specify)
2.3 Which best describes your child who does not have JDM 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 your child who does not have JDM when his/her 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 Does your child who does not have JDM 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 your child who does not have JDM from participating in play, exercise, or other activities?
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Yes No
Does the pain get worse if your child who does not have JDM plays, exercises or uses his/her muscles?
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Yes No
Additional information (anything else we should know about the muscle pain of your child who does not have JDM?):
2.4a Did your child who does not have JDM experience muscle pain when his/her 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 your child who does not have JDM from participating in play, exercise or other activities?
* must provide value
Yes No
Does the muscle pain get worse if your child who does not have JDM plays, exercises or uses his/her muscles?
* must provide value
Yes No
Additional information (Anything else we should know about the muscle pain of your child who does not have JDM?):
2.5 Does your child who does not have JDM 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:
* 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 muscle cramps prevent your child who does not have JDM from participating in play, exercise or other activities?
* must provide value
Yes No
Additional information (anything else we should know about the muscle cramps of your child who does not have JDM?)
2.5a Did your child who does not have JDM experience muscle cramps when his/her sibling's JDM was at its worst? Cramps are generally defined as a sudden involuntary contraction of a muscle that is often painful but lasts only a short time.
* must provide value
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 muscle cramps prevent your child who does not have JDM from participating in play, exercise or other activities?
* must provide value
Yes No
Additional information (anything else we should know about the muscle cramps of your child who does not have JDM?)
2.6 Does your child who does not have JDM currently experience joint contractures/tightness or muscle stiffness (in the past 7 days) that prevent him/her from fully moving a segment of an arm or leg?
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Yes No
Does the muscle stiffness prevent your child who does not have JDM from participating in play, exercise or other activities?
* must provide value
Yes No
Additional information (anything else we should know about the muscle stiffness of your child who do not have JDM?)
2.7 Did your child who does not have JDM experience joint contractures/tightness or muscle stiffness that prevented him/her from fully moving a segment of an arm or leg when his/her sibling's JDM was at it's worst?
* must provide value
Yes No
Does the muscle stiffness prevent your child who does not have JDM from participating in play, exercise or other activities?
* must provide value
Yes No
Additional information (anything else we should know about the muscle stiffness of your child who does not have JDM?)
3.0 Over the past week, does fatigue (a feeling of a lack of energy) prevent your child who does not have JDM from participating in activities that require movement?
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Yes No
How many days a week does fatigue limit activities of your child who does not have JDM?
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1 2 3 4 5 6 7
Additional information (anything else we should know about the fatigue of your child who does not have JDM?)
3.1 Do you feel like your child who does not have JDM has enough energy to do the things he/she want to do each day?
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Yes No Additional information
Additional information (anything else we should know about the energy level of your child who does not have JDM?)
3.2 Does sleepiness prevent your child who does not have JDM from participating in activities he/she enjoy doing?
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Yes No
How many days a week does sleepiness limit activities of your child who does not have JDM?
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1 2 3 4 5 6 7
Additional information (anything else we should know about the level of sleepiness of your child who does not have JDM?)
3.3 Does your child who does not have JDM has a hard time concentrating?
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Yes No
How many days a week does your child who does not have JDM have a hard time concentrating
* must provide value
1 2 3 4 5 6 7
Does the difficulty concentrating keep your child who does not have JDM from participating in daily activities?
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Yes No
Additional information (anything else we should know about the ability to concentrate of your child who does not have JDM?)
3.4 Do feelings of depression or sadness prevent your child who does not have JDM from doing activities he/she enjoy doing?
* must provide value
Yes No
How many days a week does a feeling of depression or sadness limit activities of your child who does not have JDM?
* must provide value
1 2 3 4 5 6 7
Additional information (anything else we should know about the emotional state of your child who does not have JDM?)
3.5 Has your child who does not have JDM needed to adjust his/her sleeping habits due to feelings of fatigue?
* must provide value
Yes No
Please check all that apply
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Additional information (anything else we should know about the sleeping habits of your child who does not have JDM?)
4.1a Which of the options below best describes your child who does not have JDM highest level of activity during the year before his/her sibling was diagnosis with JDM AND currently (over last 7 days)? Please check the one box that best describes the highest level activity of your child who does not have JDM during 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 child who does not have JDM highest level of activity currently (over the last 7 days) compared to his/her sibling who has JDM? Please check the one box that best describes the highest level of activity of your child for the indicated period of time.
Currently (Last 7 Days), best describes your child?
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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 your child who does not have JDM 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 child's walking ability?)
4.3 How far could your child who did not have JDM walk at a comfortable speed before needing to stop and rest in one year before his/her sibling was diagnosed with JDM?
* 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 child's walking ability?)
4.4 Over the past 7 days, on average, how long can your child who does not have JDM 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 child's rest breaks?)
4.5 How long could your child who did not have JDM play or participate in exercise or a sport before having to stop and rest in one year before his/her sibling was diagnosed with JDM (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 child's rest breaks?)
4.6 How would you characterize the highest level of participation in physical activities of your child who does not have JDM 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 highest level of participation in physical activities of your child who does not have JDM in the one year before his/her 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 your child who does not have JDM PARTICIPATED in the following activities before his/her sibling was diagnosed with JDM, STOPPED participating in the following activities after his/her sibling was diagnosed with JDM, or CURRENTLY participating in any of the following activities. Please leave blank if your child who does not have JDM never participated in the activity. Check all that apply.
Please select the primary reasons (up to three) that your healthy child stopped participating in this activity
First choice
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My child lost interest in the activity My child doesn't 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 my child to participate My child was too tired to keep participating My child had a hard time catching their breath My child experienced too much pain in his/her muscles (known as myalgia) My child experienced too many muscle cramps (a sudden involuntary contraction a muscle that is often painful, but lasts only a short time) My child was too weak to continue participating My child has too much muscle or joint stiffness to participate The activity required too much time in the sun My child lacked endurance Other
Second Choice
* must provide value
My child lost interest in the activity My child doesn't 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 my child to participate My child was too tired to keep participating My child had a hard time catching their breath My child experienced too much pain in his/her muscles (known as myalgia) My child experienced too many muscle cramps (a sudden involuntary contraction a muscle that is often painful, but lasts only a short time) My child was too weak to continue participating My child has too much muscle or joint stiffness to participate The activity required too much time in the sun My child lacked endurance Other
Third choice
* must provide value
My child lost interest in the activity My child doesn't 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 my child to participate My child was too tired to keep participating My child had a hard time catching their breath My child experienced too much pain in his/her muscles (known as myalgia) My child experienced too many muscle cramps (a sudden involuntary contraction a muscle that is often painful, but lasts only a short time) My child was too weak to continue participating My child has too much muscle or joint stiffness to participate The activity required too much time in the sun My child lacked endurance Other
4.9 In the past 7 days, has your child who does not have JDM had to modify his/her participation in play, exercise or sports?
* must provide value
Yes
No
In what ways has your child who does not have JDM modified his/her participation? Check all that apply
* must provide value
Additional information (anything else we should know about the changes of your child who does not have JDM participation in paly, exercise, or sports?)
5.1 What other symptoms, conditions, or factors prevent your child who does not have JDM from fully participating in meaningful daily activities?
* must provide value
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