Current Down Syndrome Research Opportunities

Parent Survey of Literacy Skills in Children with Intellectual and Developmental Disabilities

If you are a parent of a child with an intellectual or developmental disability between 6 and 17 years of age, you are invited to participate in an online survey conducted by Dr. Audra Sterling’s Research in Developmental Disabilities Language Lab at the Waisman Center at the University of Wisconsin – Madison.
The purpose of this study is to learn more about the literacy development of children with intellectual and developmental disabilities. If you decide that you would like to
participate, we will ask you to complete a short survey including questions about your
child’s literacy skills and your home literacy practices.
If you are interested in this study, please click on the link below.

Strategies for Teaching Verbs in Children with Down syndrome

Help us explore how children learn verbs.
Who: Children with Down syndrome, 7 to 16 years old
What children will do: • Complete language and cognitive assessments at the
start of the study • Attend one verb learning session—fun, interactive activities to learn words Participants will receive up to $50 as compensation for their
time. Melanie Schuele, PhD, CCC-SLP is the faculty advisor coordinating this study. Alison Hessling, MS, CCC- SLP (PhD student) and Jena McDaniel, MS, CCC-SLP
(PhD student) will complete study activities with children. Contact: (615) 936-5136

Disability Identity Development Study

Researchers at Vanderbilt University are conducting study to survey individuals with disabilities to learn more about disability identity development. The survey will take no more than 30 minutes to complete and contains basic questions about yourself, your disability, your interactions with others, your involvement with the disability community and perceptions about your identity. If you choose to participate, you may enter your contact information (or you may opt out by not entering it) to enter a drawing for a $100 Amazon gift card.

In order to be eligible to participate in this study, you must be 18 years of age or older, identify as having a disability (visible or hidden), able to reliably complete self-report measures in English, live or reside in the United States. If you are interested in participating, you may access the survey here:

The Accessible Worship project at Vanderbilt University is inviting people with disabilities in Middle Tennessee to share their experiences and recommendations on how churches can enhance the accessibility of their worship practices.  Be part of a new research project exploring what it means to design worship services in ways that support the presence and participation of every member—with and without disabilities. The goal of our project is to equip and encourage churches to be places of inclusion and belonging for people with disabilities and their families. Your voice is needed!

To participate, you must:Have a disability
Attend a local church (or desire to do so)
Be at least 18 years old
Live in Middle Tennessee

To learn more, visit or email Erik Carter, Professor of Special Education at Vanderbilt University, at

Parent and Caregiver Perspectives on Independent Living is a study to determine the perspectives of parents and caregivers of individuals with intellectual or other developmental disabilities including autism, between the ages of 5 to 22 on: (1) independent living for their child; (2) independent living skills instruction; (3) independent living skills instruction their child has received in the school setting; (4) who is or should be the primary person responsible for independent living skills instruction; and (5) what independent living skills should be considered as part of the curriculum. The goal is to better support professionals in designing, planning, and implementing instruction to meet expectations for parents regarding their child's future.
The survey will take approximately 15-20 minutes to complete. All responses are confidential. Only the principal investigators will have access to the completed surveys. This study has been approved by the Vanderbilt University IRB.
If you have any questions about this research study, please contact Katie Clouse at:
Link to survey:

Can water exercises help your child’s balance?
Belmont is having free water exercise classes on Tuesday and Thursday evenings for your child (ages 7 to 25) at 5:30pm from September 3rd until October 10th. Sessions will be held at the Gordon Jewish Community Center. (801 Percy Warner Boulevard | Nashville, TN 37205) Help Belmont Students while giving your child a chance to exercise in an indoor pool! If interested (or even if you just have questions) send an email to Natalie at or text her at 615-604-3727.

Interactive Toys Study

Currently the Infant Learning Lab is recruiting children with Down syndrome between 6 months and 5 years for a new research study. This study involves one single visit to our lab at Vanderbilt Campus for 1.5-2 hours. Children will be observed while playing with different toys/objects that light up and make sound. We will also conduct a standardized cognitive assessment during the study. Caregivers will be asked to fill out a few questionnaires regarding the overall development of their child. All families will receive $25 gift cards and small toys after the completion of the study. Contact: 615-322-3630

TEIS to Preschool Family Survey (3 to 5 Years Old)

If you have a child ages 3 - 5 who RECENTLY (in the past 3 years), moved from TEIS (Tennessee Early Intervention Services) to preschool or an early education program, STEP, Inc. would love your feedback to learn what helped you and your child feel prepared during this time of transition, as well as any challenges you experienced.
The information you provide by completing this brief 8-minute survey will be used to assist the Tennessee Department of Education and STEP, Inc. to improve early education services for children with disabilities and provided needed information to families.
All answers are confidential.

Sensory research for infants and toddlers with Down syndrome

Would you like to help us learn more about infants with Down syndrome?
Vanderbilt is looking for parents of infants with Down syndrome (ages 4-36 months old) who would like more information about their child’s development. Participating families come to the Vanderbilt Bill Wilkerson Center for multiple appointments until the child is three years old to complete developmental assessments and other experimental tasks. Infants and toddlers will receive standardized developmental and language testing when they enter the study and at the follow-up visits. You will receive developmental information about your child at each visit, including results, recommendations, and referrals, and a psychological assessment for autism with a formal written report at the final visit, all at no cost. Participants will be compensated at a rate of $20/hour at each study visit.
Contact: or (609) 346-6539

Healthcare and Down syndrome

The Bryan Summer Research Program in Mathematics at Simpson College ( The purpose of the survey is to identify gaps in clinical care for people with Down syndrome and to build a concrete understanding of how to fill these gaps. 

If you are interested taking the survey you can find the English version here (, the Spanish version here (, and the French version here ( No one will be asked to provide their name or the name of their family member with Down syndrome. This study is being supervised by Dr. Heidi Berger at Simpson College and Dr. Anne Kohler at Colgate University. For questions Dr. Berger can be reached at and Dr. Kohler can be reached at survey has institutional review board approval from Simpson College  

How Tennesseans view decision making for people with disabilities

The Arc Tennessee, Disability Rights TN, the TN Council on Developmental Disabilities and other groups have been educating people across the state about supported decision making and other options available to support people with disabilities to make informed choices for the past few years.  As part of that education, we have learned that messaging is extremely important.  To help in this area, Disability Rights Tennessee and Advocate Market Research are conducting online focus groups in May 2019 to learn more about how Tennesseans view decision making for people with disabilities. Groups will last 90 minutes and internet access via a computer with a camera and microphone are required. Participants will be compensated with Visa gift cards for their time. If you are interested, please complete the survey at the link below. You may be contacted for more information or to confirm your availability.  There are limited spaces available for the focus groups.  Completing the survey does not guarantee that you will be part of the focus group.

Exploration of Disability Identity with Youth

Anjali J. Forber-Pratt, Ph.D., Assistant Professor at Vanderbilt University is looking for students in middle and high school who are between ages of 12-17 to take a brief 10-minute survey on disability identity development and participate in an ~45 minute interview via phone or Zoom. The goal of this research is to better understand how teens view and feel about their disability and their identity process. The signup link for interview slots can be found here: 

Hope as an influence of resilience among parents with a child diagnosed with a developmental disability

Are you a parent of a child with a developmental disability? A Tennessee State University researcher, Matthew Kettelhake, B.A, wants your valuable input about your experiences as a parent who has a child diagnosed with a developmental disability. This project is a Masters’ Thesis examining the influence hope has on resilience among parents who have a child diagnosed with a developmental disability. You qualify for this study if you have a child between the ages 4-25 diagnosed with a developmental disability living at home with you. If you are a parent with a child with a developmental disability and are interested in participating in the study, please follow the link below to complete the survey. 
Email questions to: 

The Music in Children and Families study

Recruiting participants to examine musical experiences in families of children with and without developmental, medical, or mental health conditions. Who: Parent of a child 6 months to 5 years of age What: Complete a secure online survey (up to 30 minutes) about musical engagement and social and emotional well-being in children, parents, and families. Where: Access the survey at Contact: 
(615) 873-0852
Principal Investigator: Miriam Lense, Ph.D. Graphic design support provided by the Vanderbilt Kennedy Center for Research on Human Development. 

Infant Brain Imaging Study: Brain Development in Down Syndrome

The study’s goal is to increase our understanding of how the brain is affected in infants with and without Down syndrome. This may in turn provide clues that could eventually help identify therapeutic targets for intervention for individuals with Down syndrome. Infants with Down syndrome between the ages of birth to 6-months-old. Expectant parents encouraged to contact us. Also recruiting typically developing infants between the ages of birth to 6-months-old. Eligible infants and parents will: Travel to St. Louis when babies are 6-months, 12-months, and 24-months-old, Infants complete developmental testing and MRI scan, Reimbursement for study related
expenses and $100 compensation per visit for assessments and MRI scans. To enroll or obtain additional information, please call Lisa Flake at 888-845-6786 or e-mail:


Researchers in the IBIS Network are recruiting male and female children with a diagnosis of Down syndrome between 7-11 years of age for a new research study to examine brain development. The goal of our study is to increase our understanding of how the brain is affected in children with Down syndrome. This may in turn provide clues that could eventually help identify therapeutic targets for interventions for individuals with Down syndrome. Requires travel to nearest IBIS location with reimbursement for travel and related expenses, Mock MRI training to help
children learn to lay still in the scanner without sedation, behavioral
assessments and an MRI scan at no cost. TO LEARN MORE CONTACT US: 

AAC Surveys

The purpose of the study is to gather information on the perspectives of the family and self-advocate on: (a) the recommendation process of AAC services, supports, and systems; (b) the system selection process; and (c) the training and supports provided post system selection. By gathering information and variables that lead to positive and negative experience and outcomes of self-advocates and their families or caregivers, we hope to outline key elements to minimize experiences that may be contributing to high levels of device abandonment for professionals. Self Advocate Survey Link- 
Parent Survey Link-
Katie Clouse, Vanderbilt University, M.Ed Special Education Student 

Verb learning in children and adolescents with Down syndrome

The Child Language and Literacy Lab (PI: Dr. Melanie C. Schuele) is continuing a research study on verb learning in children and adolescents with Down syndrome. The study involves completing a hearing screening, speech-language evaluation, and word-learning task. The study consists of two visits that take place at Vanderbilt for families of children with Down syndrome with the age range of 7 to 16 years old.

Project SPARK

Dr. Chris Lemons at Vanderbilt University is conducting a study to support paraprofessionals to deliver reading and math instruction to students with Down syndrome (Grades K-8). The study will take place in Atlanta, Nashville, and Dallas. Researchers will train paraprofessionals to deliver a reading or math intervention to participating students. The schools will receive the intervention materials and support at no cost. The paraprofessional and special education teacher will receive an honorarium.  


Brooke Faught, a Women’s Health Nurse Practitioner and the Clinical Director of the Women’s Institute for Sexual Health (WISH), a division of Urology Associates in Nashville, Tennessee, is the mother of three daughters, one of whom has Down Syndrome. Is conducting a study to improve participant awareness of social boundaries in order to reduce the potential for sexual abuse and increase the capacity for experiencing appropriate intimate relationships. Inclusion criteria are females with Down Syndrome, ages 16-25 years. Participants must not have additional genetic or behavioral co-diagnoses.  If you have any questions about this project, or if you are interested in participating, please contact her directly at


Designed to be the largest and most comprehensive study of its kind, The Human Trisome Project will help us understand why individuals with Down syndrome (trisomy 21) are protected from some medical conditions, such as cancer, while highly predisposed to others, such as Alzheimer's disease. This research will serve first and foremost the population with Down syndrome, but also the millions of individuals without Down syndrome who are affected by the many medical conditions modulated by trisomy 21.


Participants sought for an online survey asking parents and legal guardians of children with disabilities about their experiences in Individualized Education Plan (IEP) meetings. Parents/legal guardians must have children with disabilities who (a) are between the ages of 5 and 21 years, and (b) have a current IEP. Participants can anonymously share their IEP meeting experiences. Fifty randomly selected participants will receive a $20 gift card to the store of their choice. The survey will take approximately 30 minutes to complete. Contact Kelli Sanderson, (615) 348-8272.


The Infant Learning Lab at Vanderbilt University is conducting studies to understand the cognitive and motor development of infants and children with Down syndrome between 4 months and 15 years. This study involves one single visit to the Vanderbilt campus for around 1.5-2 hours. Children will play with different toys/objects while wearing special markers to track arm movements. We will also conduct a standardized IQ assessment during the study. Parents/caregivers will fill out several questionnaires regarding the overall development of their child. Parents/caregivers will receive $25 gift card and children will get a small toy after the completion of the study. Our assessments involve fun games with toys that kids usually love! Contact us for more details or (615) 322-3630 Check our website at: 


This study involves children playing with various objects which produce attractive light/sound when triggered, e.g. musical sound on feeding a toy hippo, or light on shaking a ball. We will also administer a standardized IQ assessment during the study. We might also collect a copy of the medical record to confirm the diagnosis of the child. Looking for infants and young children with Down Syndrome between 6 and 60 months. Contact for more information Vanderbilt Infant Learning Lab 615-322-3630 or e-mail


Students in the Occupational Therapy Doctorate Program at Belmont University in Nashville, Tennessee are currently working on a thesis project studying the perceptions of social participation in individuals with intellectual or developmental disabilities. They are looking for participants between the ages of 16-35 to complete surveys asking questions about social participation. They will have proxies to help those who need assistance. The study takes about 20 minutes. Results of the study will be shared with the DSAMT to help with future programming. If interested in participating or have any questions, please contact Halle Jarnagin at

New Vanderbilt Family Residential and Respite Care Services Survey

Researchers at Vanderbilt are conducting a national survey of families of adults with disabilities to explore the factors associated with different types of residential placements and respite care services for adults with disabilities. The survey will take less than 30 minutes to complete. The survey is anonymous and voluntary and the responses are confidential. Your responses will be helpful in determining issues and supports related to residential and respite care services. The researchers will raffle ten $25 gift cards to a store of the participant’s choice at the close of the survey for participants who complete the survey. If you have any questions or concerns about the survey, contact Maria P. Mello, M.Ed., BCBA at or at (615) 669-2581. To complete the survey, follow the link:

To access this resource, please click on this link.