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/.  

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.

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.

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). 

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. 

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

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 research aims to explore barriers and facilitators to accessing supports. The research may yield information to inform policy and practice so better supports can be provided to adults with IDD. Participants must be 18 years or older and either be an adult with IDD or a family member of an adult with IDD. Participants will complete a survey and an interview. Both will take around 1.5 hours and can be completed virtually.

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.