Virtual / Online

This study explores how children with Down syndrome in remission from leukemia and their families experience survivorship, focusing on their daily lives, support systems and strengths and skills gained through their experience.

The Down Syndrome Health Measure (DSHM) is a new, short survey that was created specifically with people with Down syndrome in mind, and asks questions about aspects of overall health. Now that this final measure is available, we’re interested in collecting feedback on the survey from caregivers of individuals with Down syndrome age 0 to 21.

Family caregivers of adults living with Down syndrome or another intellectual disability who are experiencing memory changes are invited to participate in CarePRO Virtual-DS/ID, a free 5-week online workshop designed to reduce distress and improve quality of life.

The purpose of this study is to focus on how individuals from the Down syndrome community (caregivers and self-advocates) understand how to participate in research studies, how they perceive research studies, and how past experiences shape their decisions in participating in research studies.

This research study aims to understand whether families of individuals with Down syndrome have received education from healthcare providers about the risk of infantile spasms and to identify if there are geographic or demographic differences in who receives this information.

The purpose of this study is to understand how doctors, patients with Down syndrome and their supporters talk to each other during clinic visits.

The purpose of the research study is to create a fun, easy-to-use mobile app to support healthy habits in teens and young adults with Down syndrome.

This observational study will help researchers better understand the everyday movements and activities of infants younger than 12 months (adjusted for prematurity) with Down syndrome and track their motor skills over time.

The goal of this study is to learn about differences in thinking, learning, and behavior for individuals with Down syndrome with and without a history of childhood cancer; we are recruiting parents and caregivers of individuals with Down syndrome and no history of childhood cancer for this part of the study.

This is a VIRTUAL 3-month intervention study of the effects of a smartphone application (HippoCamera) on personal event memory in teens and young adults with Down syndrome.