Participate in Research Studies

• We are enrolling children who are between 5-18 years of age and are diagnosed with Down syndrome for a national study that will examine energy expenditure and weight-related behaviors (nutrition, sleep ,and activity). 

For more information please contact: Dr. Michele Polfuss at mpolfuss@uwm.edu or (920) 470-2150 

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

Contact Brittany Nelson @ 314-747-8425 for more information. 

Website: https://anceslab.wustl.edu/for-participants/active-studies/

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. 

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.

The study hopes to expand resources available to individuals with Down syndrome by evaluating the feasibility and reliability of the NIHTB-CB in populations with intellectual and developmental disabilities. Researchers aim to learn whether innovative tests that measure focus and thinking are sensitive to the FDA approved ADHD medication Quillivant XR in individuals with intellectual or developmental disabilities. Participants must be between 6-24 years of age, have an intellectual or developmental disability, and have ADHD or symptoms of ADHD. Participants will receive $25 for completing the screening, $50 for each completed in-person visit, and $100 gift card for iBehavior observations. In-person visits will take place at Rush University Medical Center in Chicago, IL.

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.

We are inviting caregivers of children with Down syndrome 2 to 17 years old, to be part of something truly important. Did you know that we have no good tool to measure challenging behaviors among children with Down syndrome? We're on a mission to create the first-ever tool measuring challenging behavior that is specifically made FOR children with Down syndrome and created WITH the Down syndrome community. We’re calling this measure BIDS - the Behavior Inventory for Down Syndrome. So far the Down syndrome community has shared what concerns them and helped make the tool shorter. To make the best tool possible, now we need YOUR help. The BIDS survey is designed to understand your child's behavior better. We want to know the BEST way to ask the question, so some questions may sound the same. Your answers will help us choose the best one. This research study is led by clinical researchers at Cincinnati Children’s Hospital (Anna Esbensen, PhD) and at Children’s Hospital Colorado (Lina Patel, PsyD). Together, we can make a difference. Join us in shaping a brighter future for children with Down syndrome. To learn more, or get started, please see the details below: Who qualifies? Caregivers of a child with Down syndrome ages 2 to 17 years who live in the USA. What is involved? Eligible caregivers complete a confidential online survey regarding how often behaviors occur and how severe certain behavioral concerns are. Caregivers also complete a supplemental survey about basic demographic information and their child’s medical conditions. The survey will take about 20-50 minutes to complete, and you can return to the survey if needed. Some caregivers will be asked to fill out other surveys about behavior, or complete the BIDS 2 weeks later. You will be paid for your time completing our surveys. 
Interested? Please click on the following link when you are ready to start the survey: redcap.link/BIDS2 
Si prefiere hacer la encuesta en español, haga clic aquí: redcap.link/BIDS2_es
Thank you! Caregivers will be compensated up to $45 for their time ($25 for the required surveys and an additional $20 for the optional surveys). Watch the video below for more information.

English video link: BIDS | Cincinnati Children's (youtube.com)
Spanish video link: BIDS (Spanish) | Cincinnati Children's (youtube.com)

The goal of this study is to gain insight into the needs of preferences of teens and young adults with Down syndrome ages 13 to 21 years old to develop a sleep health intervention. Participation in this study will include a 15-minute survey that parents are caregivers will complete. Teens and young adults will participate in a virtual interview. The interview will be done using Zoom and will last around 30 minutes. Participants will be asked questions about their sleep and to share any ideas they have about how to teach other teens and young adults with Down syndrome about sleep. Parents or caregivers will also complete a 60-minute Zoom interview and will be asked about the teen/young adult's sleep, the parent's own sleep, and input on designing a sleep health intervention. Parents or caregivers and teens or young adults with Down syndrome will both receive a $20 gift card for participating.

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.

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 goal of this research is to enhance community living and participation research, policy, and practice across contexts and disciplines. The Community Living and Participation Expectations Survey is an online survey about factors that have influenced expectations for outcomes such as employment, living in the community, and making decisions. Participants must be aged 18 or older and self-disclose a diagnosis of IDD and or be a family member of an individual with IDD. The survey will take approximately 10 minutes to complete. Participants can complete the survey online or email gfranci4@gmu.edu and they will help you complete the survey over the phone. The survey also includes an opportunity for respondents to engage in a follow-up interview.

Researchers at the Sounds2Syntax Lab at the University of Massachusetts Amherst in partnership with The University of Wisconsin Madison are conducting a study funded by the National Institutes of Health that aims to investigate how executive functions are related to language skills in children with language impairment. S2S Lab is recruiting children with Down syndrome that are 9-17 years of age who speak in at least 2–3-word phrases.

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 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 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.

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.

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.

The study’s goal is to improve the way we engage individuals with Down syndrome in conversations about healthcare and empower them in medical decision-making. We are inviting teens and young adults with Down syndrome and their caregivers to participate in this study that seeks to improve the way we explain research studies to individuals with Down syndrome.  

Teens and young adults with Down syndrome between 14-30 years old are invited, and must be English or Spanish speakers to participate. Participants will be asked to provide feedback on our study materials. You will also be asked to complete questionnaires and two 1-hour audio-recorded interviews. Both parent and teen/young adult input is valuable to our research. Participation will be compensated.  

The study can be completed in person or remotely.  

Learn More: Researchers are looking for people with Down syndrome (aged 18 years or older) and their parents/caregivers to complete a questionnaire. The questionnaire aims to identify patterns, barriers, and motivators towards physical activity and exercise within the Down syndrome community. This information will help inform future programs and initiatives to encourage healthier and more inclusive physical activity and exercise options.  

Two questionnaires cover the same themes, one is for the person with Down syndrome, and the other is for the parent/caregiver. These themes include: Neighborhood environment and walkability, employment, physical activity, exercise, education, and health status. Each questionnaire is estimated to take maximally up to 45 minutes to complete and minimally 15 minutes to complete, depending on how each question is answered. Both questionnaires have the option to save progress and return for future completion.  

Both Questionnaires must be completed.

Questionnaire for the parents/caregivers

Questionnaires for the person with Down syndrome