Down syndrome is the most prevalent chromosomal cause of intellectual disability and the most common congenital disorders associated with intellectual disability. It occurs in an average of 1 out of every 700-1000 births. It affects both males and females of all ethnic and socioeconomic backgrounds. Individuals with Down syndrome have distinctive characteristics facial features. The syndrome results in higher than normal risk for associated medical conditions, including congenital heart disease (most correctable by surgery), hearing and vision impairments, gastrointestinal conditions, endocrine conditions, dental conditions, orthopedic anomalies, obesity, skin conditions, seizure disorders, leukemia, and Alzheimer’s disease. Individuals with Down syndrome have has distinctive cognitive, language, and behavioral profiles. In general, they have higher levels of adaptive behavior (e.g., self-care, getting along with others) than of intelligence. They are able to function successfully in integrated or inclusive school, living, and work environments. Individuals with Down syndrome continue to show adaptive development over adolescent and even adult years if a stimulating environment is provided. The syndrome results in an life span that is shorter than average, but it has quintupled over the course of the 20th century due to advancements in treating associated medical conditions, especially heart defects.
A survey study of social vulnerability in persons with intellectual and developmental disabilities
Principal Investigator: Robert Hodapp, Ph.D.
Other Investigators: Marisa Fisher, M.S.
Why are our sons and daughters with disabilities at higher risk of being taken advantage of? We wonder, too.
If you care about a 16 to 50 year old person with an Intellectual or Developmental Disability, and would like to help us answer this question, please contact us.
We will ask you to complete surveys about the personality, habits, behavior, gullibility, and living situation of your family member with a disability. These surveys will take about 30 to 45 minutes to complete.
Surveys will be mailed to you, with prepaid return postage for you to send them back.
Participants needed: Parents or caregivers of people with intellectual and developmental disabilities aged 16 to 50
Early Communication Project
Principal Investigator: Paul J Yoder, Ph.D.
Other Investigators: Steve Warren, PhD
Children with developmental delays will receive therapy in their homes in order to help these children communicate more frequently and eventually learn to talk.
The goal of the study is to test whether providing this therapy for 5 hours a week is better than providing it 1 hour per week.
Six evaluation sessions will take place at the Kennedy Center. Parents must be willing to participate in 8 sessions within the first three months of entering the study. The parent education sessions are designed to help parents learn to play and talk with the child in ways that help the child learn to talk.
There is no cost for the parent training, intervention sessions or assessments. Information about the child from the assessments will be shared with the family.
Participants needed: Children with a developmental disability between 18 and 27 months with fewer than 10 words, whose hearing, vision and motor skills allow them to participate in the activities.
Parenting Children and Adults with Developmental Disabilities
Principal Investigator: Elisabeth Dykens, Ph.D.
Other Investigators: Wendy Stone, PhD.
This study aims to identify the concerns, strengths, health, and well-being of parents who are raising sons or daughters with different types of developmental disabilities. Although caring for offspring with disabilities creates stresses and challenges, it also brings unique sources of strength and reward.
We aim to assess both the stresses and joys of parenting children with Down syndrome, Williams syndrome, Prader-Willi syndrome, autism spectrum disorder, and typically developing children.
Parents will complete a packet of questionnaires that assesses their coping styles, stresses, health, and mental health; the packet takes about 50 minutes to complete.
We also plan to examine stress through cortisol sampling; cortisol is a hormone associated with our responses to stress, and is easily measured in saliva.
Findings will shed new light on both the positive and more stressful sides of raising children with developmental disabilities, including ways of reducing stress and supporting families across the lifespan.
Participants needed: Parents of children with Down syndrome, Williams syndrome, Prader-Willi syndrome, and autism spectrum disorder aged 3 years through adulthood, AND parents of typically developing children age 3 to 21.
Pulmonary hypertension in persons with Down syndrome
Principal Investigator: Marshall Summar, M.D.
Other Investigators: Kimberly Vera, MD
We are interested in the health of people with Down syndrome (DS). We are interested in how common pulmonary hypertension is in people with Down syndrome. Pulmonary hypertension is high blood pressure in the lungs. It can not be checked by taking a person's blood pressure. It has few symptoms until it becomes severe. WWe would also like to know why people with DS are more at risk.
We would like to hear from individuals:
Participants needed: Individuals:
Speech Processing in Children with Down Syndrome
Principal Investigator: Alexandra Key, Ph.D.
Vanderbilt Scientist, Sasha Key, PhD, examines speech processing in both the Williams and Down syndrome populations by presenting various speech sounds to the participant while recording the electrical activity of their brain in response to the sounds. No active response is required from the child.
For more information, including pictures and video, please visit VKC EEG/ERP studies
Participants needed: 4 year old children with Down Syndrome
Study of Adolescents with Down Syndrome and Their Families
Principal Investigator: Robert Hodapp, Ph.D.
We are starting a study of behaviors, physical health, and family functioning in adolescents with Down syndrome and their families at Vanderbilt University.
Parents will complete a number of questionnaires, surveys, and interviews about their children’s behaviors, as well as about parent-family stress and coping strategies.
Teens will be given a brief cognitive and language assessment. We will share a summary of the results with you. The teen will be videotaped during a brief interaction within the study.
Participants needed: Teens with Down syndrome aged 12 through 21 years
Survey on Post-Secondary Options for Students with Intellectual Disabilities
Principal Investigator: Robert Hodapp, Ph.D.
Other Investigators: Megan Griffin, M. Ed.
Help us learn more about the options available to students with
intellectual disabilities after they leave high school.
If you are the parent of a student with an intellectual disability
who currently is enrolled in a Tennessee high school,
please participate in this anonymous survey.
The Survey on Post-Secondary Education Options for Students with Intellectual Disabilities collects information about:
Participants needed: Parents or caregivers of high school students with intellectual disabilities in Tennessee
Family Village Library listings
National Down Syndrome Society