Adult (18+)

Exploring Quality of Life in Children With Down Syndrome After Leukemia

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.
Principal investigator
Karla Ausderau, PhD
Location
Virtual or Multiple locations within United States
Age range
5 to 21 years old

Down Syndrome Health Measure (DSHM) Survey

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.
Principal investigator
Stephanie Santoro, MD
Location
Virtual
Age range
0 to 21 years old

Workshop to Help Reduce Stress for Caregivers: CarePRO Virtual-DS/ID

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.
Principal investigator
David Coon, PhD
Location
Virtual
Age range
18 years and older

Caregiver and Self-Advocate Perspectives on Research Design and Information (PARDI)

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.
Principal investigator
A. Nicole White, PhD
Location
Virtual
Age range
18 years and older

Evaluating Caregiver Awareness of Infantile Spasms Risk in Children with Down Syndrome

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.
Principal investigator
Christina Briscoe Abath MD, EdM
Location
Virtual in the United States
Age range
18 years or older

Understanding Problem Solving and Thinking Skills in Adults with Down Syndrome

Adults with Down syndrome will play games and do simple activities on the computer, on paper, and with board games. These activities help researchers learn how people think and solve problems. Parents or caregivers will answer questions about everyday skills, like memory and daily routines.
Principal investigator
Yingying Yang, PhD
Location
Montclair, New Jersey
Age range
35 to 50 years old

Studying How Diet and Weight Affect Alzheimer's Risk

The Brain Outcomes and Lifestyle in Down syndrome (BOLD) study aims to understand how dietary changes and weight impact the risk of Alzheimer's disease in adults with Down syndrome.
Principal investigator
Lauren Ptomey, PhD, RD
Location
Kansas City, KS
Age range
18 to 64 years old