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 

We are looking for youth (13 – 21 years of age) with intellectual disability for an online study. 

Click here to sign-up for the study!

For more information, please email pmhstudy@yorku.ca.

What’s this project about?

We are interested in learning about positive mental health (wellbeing) and mental health problems (e.g., anxiety, depression) for youth with intellectual disability. 

Past research has shown that it is possible for people to experience positive mental health (social, emotional and psychological well-being) while also living with a mental health problem (Keyes, 2010). We want to find out what this looks like for youth with intellectual disability!

Who can participate?

Youth with a diagnosis of intellectual disability and their family caregiver (e.g., parent) from Canada and the United States can participate.

What does participation involve?

The study involves youth answering questions over video call (Zoom) with a researcher, and parents answering survey questions.

Parents of youth with intellectual disability may also participate by completing an online survey. All aspects of this study will be conducted online. Compensation is provided.

What is the next step?

If you wish to participate, please click the link at the top of the page to fill out our study Sign-up Sheet, or email us for more info at pmhstudy@yorku.ca.

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/

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. ​
 

We are looking for caregivers of children with Down syndrome ages 6-18 to participate in an online research study about how to customize autism screening tools for children with Down syndrome. Your child does not need to have autism. Participation involves completing initial questionnaires about your child’s development (2-3 hours) and a few follow-up questions two weeks later (30 minutes). You can complete these at your own pace across multiple sessions. A family resource sheet and compensation are provided.

We are inviting parents of a child with Down syndrome (ages 2-17 years) to take part in an online research study led by researchers at Cincinnati Children’s Hospital (Anna Esbensen, PhD) and at Children’s Hospital Colorado (Lina Patel, PsyD). The goal of our research study is to create a new tool to better measure problematic behaviors in children with Down syndrome. To do this, we need your help! 

• 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. Two weeks later, caregivers will receive a follow-up email or text to complete the questions about behavior a second time. This will take about 10-35 minutes to complete. In total, participation in this study is estimated to take about 30 minutes - 1 hour 25 minutes. 

• Interested? Please click on the following link when you are ready to start the survey: https://redcap.link/BIDS1 

• Thank you! Caregivers will be compensated for their time ($10). Caregivers completing the second survey will receive an additional compensation ($10). 

• Questions? Please contact the Project Team at dsresearch@cchmc.org. 

• Si prefiere hacer la encuesta en español, haga clic aquí: https://redcap.link/BIDS1espanol 

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.

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 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.

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.