30
Participants
Start Date
March 31, 2015
Primary Completion Date
April 30, 2016
Study Completion Date
April 30, 2016
General Health Module-Baseline Adolescent-Self Report (13-18 years)
"* 38 question questionnaire~* Answers range from 1=all of the time to 5=none of the time"
General Health Module-Follow Up Adolescent-Self Report (13-18 years)
"* 38 question questionnaire about child~* Answers range from 1=all of the time to 5=none of the time"
General Health Module-Baseline Parent Report-Adolescent (13-18 years)
"* 38 question questionnaire about child~* 49 question questionnaire about parent~* Answers range from 1-all of the time to 5=none of the time"
General Health Module-Follow Up Parent Report-Adolescent (13-18 years)
"* 38 question questionnaire about child~* 49 question questionnaire about parent~* Answers range from 1-all of the time to 5=none of the time"
General Health Module-Baseline Parent Report-School Age (5-12 years)
"* 34 question questionnaire about child~* 49 question questionnaire about parent~* Answers range from 1-all of the time to 5=none of the time"
General Health Module-Follow Up Parent Report-School Age (5-12 years)
"* 34 question questionnaire about child~* 49 question questionnaire about parent~* Answers range from 1-all of the time to 5=none of the time"
Demographic Data Form
-16 questions about demographics such as household income, race, and gender
SCT Daily Activity Log
"* Uses Fitbit Flex~* Log that lists time in 15 minute increments and allows for checking when out of bed and describing the activity that occurred while out of bed"
The Functional Independence Measure for Children
"* 18-item, 7-level ordinal scale instrument that measures a child's consistent performance in essential daily functional skills. Three main domains (selfcare, mobility, and cognition) are assessed by interviewing or by observing a child's performance of a task to criterion standards~* Categorized into 2 main functional streams: Dependent (ie, requires helper: scores 1-5) and Independent (ie, requires no helper: scores 6-7). Scores 1 (total assistance) and 2 (maximal assistance) belongs to the Complete Dependence category. Scores 3 (moderate assistance), 4 (minimal contact assistance), and 5 (supervision or set-up) belongs to the Modified Dependence category. Scores 6 (modified independence) and 7 (complete independence) belongs to the Independent category."
Manual Muscle Testing
"-Isometric muscle strength is tested in specific positions, usually with the muscle at an optimal working length. Using a break test, the test giver overpowers the muscle being tested to determine the muscle grade."
3-Minute Step Test
"* Using an aerobic step, the participant walks up and down for a given amount of time with the heart rate being checked before and after~* Using the difference in heart rate and a shortness of breath scale, this test is able to give an estimate of aerobic tolerance"
HSCT Module-Follow Up Adolescent-Self Report (13-18 years)
"* 7 question questionnaire about child~* Answers range from 1=all of the time to 5=none of the time"
HSCT Module-Follow Child-Self Report (5-12 years)
"* 10 question questionnaire about child~* Answers range from 1=all of the time to 5=none of the time"
HSCT Module-Follow Up Parent Report-adolescent (13-18 years)
"* 7 question questionnaire about child~* 49 question questionnaire about parent~* Answers range from 1=all of the time to 5=none of the time"
HSCT Module-Follow Up Parent Report-School Age (5-12 years)
"* 7 question questionnaire about child~* 49 question questionnaire about parent~* Answers range from 1=all of the time to 5=none of the time"
Washington University School of Medicine, St Louis
Washington University School of Medicine
OTHER