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

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

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

Solving some of the biggest medical challenges of the Down syndrome community is a huge task. LuMind needs people with Down syndrome ages 25 years and older and their caregivers to help do it! The LIFE-DSR study aims to collect the medical, physical, and behavioral data of 270 adults with DS to address major community concerns including the high rate of Alzheimer’s disease. 

This study does not involve a trial of new medications or therapies.  The goal of LIFE-DSR is to understand Down syndrome better by gathering data to answer questions such as, “Why do so many people with Down syndrome develop Alzheimer’s disease and how can we prevent it from happening?” 

Interested in learning more? Get more details and download an informational flyer at https://dsctn.org/life-dsr/.  

Are you an adult with Down syndrome? Are you interested in participating in a research study about technology? The Technology Supports for Adults with Down Syndrome research team at UW-Madison is looking for adults (18+) with Down syndrome to
participate in a paid survey study.

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. 

My name is Mark Fleming and I am an autistic doctoral student at Concordia University at St. Paul in the Kinesiology department. As part of the process to obtain my degree, I am conducting a study on the barriers to exercise for the developmentally disabled population. I am conducting this study to understand what barriers this population perceives are a barrier in obtaining exercise. I am specifically looking at individuals aged over 18 that have been diagnosed with Attention Deficit Hyperactivity Disorder, Autism, Cerebral Palsy, Down Syndrome and their parents/caregivers. This study is completed through a short survey that will take participants no more than 5 minutes to complete. It is completely voluntary to complete, and participants can end the survey at any point. While individuals with diminished capacity are encouraged to participate, it can only be through their legal authorized representative. Consent is implied by completing the survey. I am reaching out to you because I was hoping that you/ your organization could help me complete this study by forwarding this to people you know who may want to participate in this study. A link to the study can be found below. If you have any questions please reach out and I will try my best to answer them.

Are you an adult (18+ years old) with Down syndrome/Trisomy 21?Or, do you know an adult with Down syndrome? We are looking for people to take an online survey to answer questions about their experiences with healthcare, and how much responsibility or autonomy they have in these settings. All study activities can be completed on your own schedule and in a comfortable environment. Take the eligibility survey here: https://redcap.link/3ic4e6vl

This study addresses the significant challenges faced by individuals with Down syndrome in accessing suitable clothing and participating fully in shopping experiences, which significantly impedes their engagement in professional and social activities. Adults with Down syndrome age 18+ and their caregivers will participate in a 30-minute Zoom interview. After completing the interview, participants will receive a $50 gift card.

This study looks at understanding adult sibling perspectives which can provide valuable insights into the dynamics of sibling-provider communication, the impact of the information received, and the challenges siblings may face in gaining access to this communication. Participants must be between the ages of 18-89+ years, reside in the United States, have at least one sibling with a diagnosis of Down syndrome, be able to read and understand English, and have access to an electronic device (computer, phone, tablet) with internet. The survey will take around 15 minutes and can be completed here.

The Language Impairment and Down Syndrome research lab at Baylor University would like to learn more about how to best support reading in young adults with intellectual and developmental disabilities. Everyone who participates will receive some or all of the following: therapy/tutoring, compensation, virtual reading assessments every 3-6 months, and summaries of reading growth.

Eligibility: 

• 18-26 years old
• Diagnosis of intellectual and/or developmental disability
• Reads words and sentences independently, but needs help understanding or engaging in daily reading such as text messages
• English is primary language and primarily uses oral communication

Learn More: This study aims to center the voices and experiences of adults with Down syndrome and their family members/caregivers to improve health and healthcare for this population. Participants must be an adult (18+) with Down syndrome or be a family member/caregiver of an adult with Down syndrome (18+). Participants will join a 90-minute focus group via Zoom, with up to 5 other individuals and take a short demographic survey. Participants will receive a $30 gift card for completing the study.

The Trial-Ready Cohort-Down Syndrome, or TRC-DS, matches people with Down syndrome to clinical trials related to Alzheimer’s disease. TRC-DS routinely monitors study participants for any changes to their brain health or function over time through blood tests and brain imaging to eventually match them with applicable Alzheimer’s disease clinical trials. Because participants are routinely evaluated, researchers can fast-track them for enrollment into qualifying clinical studies as soon as they are eligible and matched with one.

Healthy adults between the ages of 25 and 55 with Down syndrome are eligible to participate. Participants will visit their nearest research center once every 16 months for physical exams (like blood pressure checks and blood draws), memory skills tests, and brain scans to measure changes in their brain health and function. 

Visit https://www.trcds.org/ and find the research center nearest you.

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

People aged 16-27 with intellectual or developmental disabilities who join the STEPS2 study will either receive Steps To Your Health (STYH) classes which teach about exercise and nutrition or Socialization To Enhance Participation and Support Sexuality (STEPS2) classes which teach about decision-making, sexual health and healthy relationships. All participants must be okay with doing either program since the toss of a coin will decide which class a participant will get. All classes take place once per week for 6 weeks for up to an hour on the computer (over Zoom or another video conferencing platform). 

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.