Participate in Research Studies

This study was created to capture individuals with Down syndrome who either don’t qualify or aren’t interested in our our studies. This is an a la carte study where you can pick and choose what you’d like to do. Do as little or as much as you’d like!

• Participants with Down syndrome ages 18 and older
• Must have Study Partner
• Questionnaires
• Minimal Cognitive Testing
• Blood Work
• Stool Sample

The DS PALS Survivors study is looking to better understand long-term outcomes of leukemia in individuals with Down syndrome. Participants will be asked to fill out questionnaires and attend an in-person clinical assessment.

Contact Info: Call toll free at 1-855-474-4520 or email at DownSyndromeStudy@bcm.edu

The primary aim of this study is to investigate the efficacy of the Elevatus caregiver training through outcomes on caregivers who complete the Elevatus program for supporting the sexuality of individuals with Intellectual and Developmental Disabilities (IDD). Secondly, the proposed study will explore outcomes experienced by the individuals with IDD supported by caregivers who receive the training. The training lasts approximately 2 hours and the surveys last from 5-20 minutes. All participants must be over the age of 18.

The purpose of this study is to determine if children and adolescents age 5-18 with Down syndrome will be more motivated to participate in physical activity with an augmented-reality exercise gaming app compared to a paper handout with suggested exercises. The entire study will last 3 months. AU research will be conducted virtually via Zoom.

This study aims to improve healthcare transition for youth with intellectual and developmental disabilities including Down syndrome from racial/ethnic minority communities. We are looking for youth aged 12-26 with an intellectual or development disability from racial/ethnic minority communities to participate with their caregiver or primary support person. Youth with IDD will participate in two 1-hour virtual interview sessions, and caregivers will participate in a 1-hour virtual interview session. All interviews will be conducted virtually, so travel is not required. Each participant will receive a gift card for completing each interview. 

You can join this study conducted by Dr. Caroline G. Richter at the University of Alabama at Birmingham (UAB) to adapt a virtual Mindfulness-Based Therapy for Insomnia program for individuals with Down syndrome to improve sleep and quality of life. Participants must be 12-30 years old with a diagnosis of Down syndrome and experience sleep problems. The study involves 8 intervention sessions via zoom: 1x a week for 1 hour and wearing a Fitbit to measure sleep. Participants and their caregivers who fully complete the intervention period and surveys will receive $100 for the first assessment and $150 for the mid and final assessments ($400 total).

The purpose of this study is to investigate how control of breathing is different in children with Down Syndrome than children without Down syndrome. This study looks at respiratory neural drive in children with Down syndrome ages 10 to 17 years old and will help medical professionals understand and address these challenges, helping to enhance physical health and reduce preventable complications. Travel to Philadelphia is required, participation will take around 2-3 hours, and participants will receive a $50 gift card plus the cost of parking.

This research study is being conducted to determine the efficacy of guanfacine immediate release (GIR) for the treatment of hyperactivity/impulsivity and inattention in children with Down Syndrome (DS) ages 6-12 years old after 8 weeks of treatment.

The Pregnancy Decisions App Project (PDAP) is looking for participants for an online survey about disabilities and pregnancy. The survey takes about 30-60 minutes and can be done independently or with support from a study team member (phone or Zoom). 

The goal of the project is to create a phone app for people with developmental disabilities, including autism and intellectual disabilities. The app will help people decide whether they want to get pregnant or not, as well as provide accessible resources and information about pregnancy. The survey will help us know what to put in the app. Participants must be 18-50 years old, live in the US, have a developmental disability, and be able to get pregnant (even if it is unlikely). Researchers hope to empower people with IDD to feel more confident in making their own reproductive health decisions. Participants will receive a $25 gift card for completing the survey.

Researchers are looking for adults with Down syndrome (18-64) to join a research study to help us learn how changing what someone eats and what they weight impacts their risk of developing Alzheimer's disease.

Adults with Down syndrome will either follow a weight loss program or get information about how to improve their overall health. The study is 12 months long and includes monthly virtual meetings and up to 5 visits to the University of Kansas Medical Center. There is no cost to join the study and participants will be compensated for their participation.

This study aims to better understand the challenges that parents with intellectual disabilities face during pregnancy while using Medicaid services. We aim to provide policy recommendations to improve health equity for disabled people who are pregnant. Participants will first complete an interest form with their contact information. A research assistant will then set up a 20-30 minute long Zoom or phone call to screen the participant for eligibility and enroll the participant into the study, if eligible. Then, the participant will schedule a 60-90 minute Zoom call with the interviewer. Participants will receive a $50 Visa or Amazon gift card. Learn more.

This study hopes to elevate the voices and experiences of individuals with disabilities regarding abuse. The results will help identify service gaps and promote trauma-informed, inclusive care. Participants will complete an online survey (available in English, Spanish, and ASL) and must be 18 years or older. The survey includes questions about lived experiences with abuse, impact, and support services. Participation is anonymous and voluntary. Individuals can participate as survivors, supporters, or professionals. Learn more and take the survey.

Researchers in the Down Syndrome Program & the Labs of Cognitive Neuroscience at Boston Children’s Hospital are recruiting young children between 2 and 5 years old, with Down Syndrome (DS) to participate in a study investigating how differences in brain activity affect learning, language, and behavior in DS. This is for Children aged 24-​​66 months with Down syndrome.

What will you do?  

2 visits, each one year apart, at the Labs of Cognitive Neuroscience at Boston Children’s Hospital.  

Each visit includes clinical and behavioral assessments that will evaluate your child’s thinking, motor skills, language skills, and social communication. In addition, we will measure your child’s brain activity using electroencephalography (EEG).   

EEG is a safe and radiation-free way to measure brain activity in response to different sounds and pictures.   

What will you receive?  

Families will receive a small toy and ​​$50 per visit for participating. We will provide free parking and child care for siblings.  

Families will receive a written report about their child’s development. Families can learn more about the lab by visiting wherekidshelpkids.org. ​
 

The impact of hearing loss on the speech, language, and cognitive skills of individuals with Down syndrome is largely unstudied. This study aims to bring into focus the importance of hearing health on the ability of these individuals to thrive.

Study participants must use English as their primary language, regularly communicate in 2- to 3-word spoken utterances, and be willing to undergo an MRI scan to participate. Participants will not be enrolled in the study if they have had a significant brain injury or have dementia. This study involves in-person participation at the University of Wisconsin Waisman Center in Madison, WI. Participation requires about 12 total hours, typically split across 2–4 visits; for families traveling from outside Madison, testing is usually scheduled over two consecutive days.

Individuals with Down syndrome will complete a hearing evaluation, listening games, cognitive tasks, an MRI, and an EEG. Caregivers will complete four questionnaires. Participants who complete the full study receive approximately $250. Families traveling more than 60 miles may receive travel reimbursement and hotel accommodations.