Participate in Research Studies

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.

Researchers are doing a study on a medication called Abrocitinib. They are looking for people who have Down syndrome and Alopecia Areata (hair loss) and/or Atopic Dermatitis (eczema).

If you decide to allow your child to take part in this research study, you/your child will be responsible for the following things:

·       Going to all scheduled visits at the Upper East Side, NYC clinic location.
·       Following the study staff’s instructions about the study.
·       Telling the study staff about any illnesses or injuries your child experiences.
·       Telling the study staff about any new or changes to medicines your child is taking (including vaccinations and contraception).
·       Telling the study staff about any side effects or problems that occur during the study.
·       Telling the study staff if your child plans to have any surgery or any other medical treatments or procedures for your child.
·       Not getting any live vaccines (MMR [mumps, measles, rubella], chickenpox, FluMist). If your child is scheduled to receive one of these vaccines, please notify the study team in advance so that the study team can make any necessary changes in your child’s dosing schedule. If someone in your/your child’s household has received a live or attenuated vaccine please inform the study staff as soon as possible.

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 Department of Occupational Therapy at TCU is conducting a research study to better understand access to rehabilitation services and identify barriers and unmet needs among adolescents and adults with Down syndrome during the transition from childhood to adulthood. For individuals with Down syndrome, visit here. For support persons, visit here.

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. 

Researchers are recruiting teens and adults with Down syndrome (ages 15 and up) to study neural and cognitive development in memory.

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.

The goal of this study is to understand how executive functioning skills, such as working memory and inhibition, are related to everyday adaptive behaviors in youth with intellectual disability. The study aims to improve understanding and practical support in daily life.

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 is an online research study to develop a new screening measure of changes in adaptive behavior in adolescents and adults with Down syndrome. Parents or legal guardians of a person with Down syndrome aged 10-30 are eligible to participate.

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.

Researchers are looking for volunteers to join a research project focused on understanding life after treatment. This is one of the first studies where children and parents / caregivers can share their stories of survivorship, what daily life looks like, what supports have helped, and what strengths your family has discovered along the way. Families are eligible if the child is co-diagnosed with Down syndrome and leukemia before the age of 14 and it has been at least 6 months since the child’s last treatment.

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.

HomeGrown is an online program designed specifically to help families with young children with Down syndrome improve nutrition and physical activity practices at home. Co-designed by families, content experts, occupational therapists, and physical therapists, HomeGrown helps you discover strategies that are supported by research, practical for your family, and meaningful for your child. Families are eligible to participate in the HomeGrown study if they have a child ages 2- 6 years who has been diagnosed with Down syndrome.