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Autism Quality of Life
This study is now recruiting.
The purpose of this research study is to test how well a common, standardized quality of life tool measures quality of life among children on the autism spectrum who are minimally verbal or have an intellectual disability. Parents/ caregivers of autistic children (ages 5-17) who are minimally verbal or have an intellectual disability are eligible to participate in the study.
About 35% of children on the autism spectrum also have an intellectual disability, so it is important to include families with autistic children who are minimally verbal and/or have intellectual disability in research.
Who Do I Contact?
If you are interested in participating in the study or want to learn more please contact our study team at kaplankahe [at] chop.edu or 267-426-7540.
Eligibility & Criteria
Study participation involves filling out surveys online. The surveys take about 30 minutes to complete. One survey asks demographic questions about you and your child, such as your child's age, race, and language abilities. The other surveys ask you to report on different aspects of your child's quality of life (e.g., family relationships, sleep, anxiety, etc.). Some questions may be difficult to answer for your child - we want to know which questions are and are not suited for capturing your child's quality of life.
You will receive compensation for participating in the study. You may also be asked to participate in a follow up interview to tell us your opinion about the surveys if you would like.
If you are interested in participating in this study or want to learn more, please visit our study page at: https://redcap.link/pablid