About this study
Children with Down syndrome are more likely to get a type of cancer called acute lymphoblastic leukemia (ALL) than children who do not have Down syndrome. They also have a harder time with cancer treatments. Sadly, survivors of ALL with Down syndrome have been excluded from studies of cognitive, behavior, and quality of life outcomes. Because of this, doctors do not have enough information to give them the best care after cancer.
This study will look at how ALL and cancer treatment impact thinking, learning, and quality of life after cancer in children with Down syndrome who survived ALL.
We are asking parents or caregivers of people with Down syndrome who have never had cancer to take part in this study. Researchers at other institutions will collect the same information from people with Down syndrome that were treated for ALL. This way, we can compare the 2 groups.
The parent or caregiver will complete surveys to give information about their child’s thinking, learning, behavior, and quality of life. Surveys can be completed on a computer, by mail, or by phone. Surveys are available in English, Spanish, and French. Participants will complete surveys 3 times over a 3-year period.
We hope to learn the long-term effects of cancer and its treatment on children with Down syndrome. This information will help doctors give better care and support to these children and their families. It may also lead to new tools and guidelines to improve their lives after cancer.
Eligibility overview
- Caregiver or parent of a person with Down syndrome
- Person with Down syndrome must be 1–34 years old at study entry.
- Person with Down syndrome must not have a history of childhood cancer.
- Caregiver or parent can speak and read English, French, or Spanish.