Virtual

Improving Medicaid Services for Pregnant Individuals with Developmental Disabilities

This virtual study aims to improve Medicaid services for individuals with developmental disabilities by gathering more data on pregnancy experiences, outcomes, and quality of medical services from adult women with intellectual and developmental disabilities.
Principal investigator
Eric Rubenstein, PhD, ScM
Location
Virtual
Age range
18 years and older

CareFit: Exercise Program Full of Movement, Music and Aging Support

This study aims to help us learn how a supportive caregiver training class and virtual group exercise classes can help older people with Down syndrome and their caregivers as they engage in physical activity.
Principal investigator
Amy Bodde, PhD, MPH
Location
Virtual
Age range
35 and older

Sibling Relationship Quality and Perspectives in Down Syndrome

The Sibling Relationship Quality and Perspectives in Down Syndrome study aims to better understand relationships between adults with Down syndrome and their siblings.
Principal investigator
Milton Yoon and Sigan Hartley, PhD
Location
Virtual
Age range
18 years and older

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