2024 Research Studies
Check out the following research studies currently looking for individuals with Down syndrome and their families to participate.
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Caregivers
Project Wellcast: Supporting Wellbeing of Caregivers Via Telehealth
Learn more
What is Project WellCAST?
Project WellCAST is a NIH-funded clinical trial that aims to support caregiver well-being through supportive therapy, resources, and family friendly treatment. This research study will include up to 1,000 caregivers of children with a variety of neurogenetic syndromes associated with intellectual disability, including (but not limited to) Angelman syndrome, Down syndrome, Dup15q syndrome, fragile X syndrome, Prader Willi syndrome, and Williams syndromes.
Our goal is to understand which supports and therapies are best suited to the needs of rare disorder caregivers. To accomplish this goal, participants will be assigned to receive a resource or evidence-based therapy that is commonly used in clinical settings. Supports formats vary and may include self-guided resources, peer coaching, individual therapies, or group therapies. The focus of support also differs; some programs focus on your well-being as a caregiver, and others focus on helping you to support your child's development. By trying many types of treatment across many different people, we want to learn which of these evidence-based supports are best for rare disorder caregivers with a variety of backgrounds, strengths, and needs.
Because this is a research study, families will be assigned to a support program and cannot select which type of support they receive. However, families will be given the option to decline any type of support prior to enrolling in the project and, once they do enroll, may stop participating in the study at any time, without penalty. If the current WellCAST phase is full, some families will also be offered the opportunity to join a waitlist for the next cycle of treatment.
Data collection is an important part of Project WellCAST. We will collect data from participants across a variety of methods, including interviews, questionnaires, and smartphone-based "snapshot surveys" that measure participants' experiences as they go about their daily lives.
Participating in Project WellCAST is free, and we provide all of the technology and tools you will need to participate. Participants receive up to $100 for sharing data with us throughout the study. In total, Project WellCAST activities span approximately 6.5 months, including 2 weeks of baseline data collection, 12 weeks of a support program, and 2 weeks of follow-up data collection. There is some “down time” between phases during which no data collection occurs.
Project WellCAST is open to caregivers from a variety of backgrounds, races, ethnicities, and identities. Within Project WellCAST, Black caregivers are eligible for additional culturally-informed treatments focused on experiences of racism and discrimination. These support groups are available regardless of the other types of supports caregivers are assigned to receive.
Who is eligible?
Eligibility varies across support options. However, general eligibility criteria include:
- Caregiver (age 18+) of a child ages 2-35
- Child must have a documented neurogenetic condition typically associated with intellectual disability and/or developmental delays; condition may not be neurodegenerative in nature
- Caregiver must reside in the US and be fluent in English
- Additional eligibility criteria may apply.
How do I learn more?
If you would like to learn more or determine if you are eligible to participate, please email us at wellcast@purdue.edu.
For more information, you can visit: https://kelleherlab.weebly.com/project-wellcast.html
Contact Info
Healthcare Experiences of Children and Young Adults with Intellectual Disability
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Parents whose child has intellectual disability are needed for a study about healthcare experiences for their child.
Who?
Parents of a child who is 9 - 22 years with an intellectual disability
What will you do?
Be interviewed by a trained nurse-researcher about healthcare decisions you make for your child with an intellectual disability
Where?
After intake screening, 1 to 1 ½ hour interview will take place over the Internet by Zoom. Optional second interview may be offered.
$50 compensation, per interview.
To volunteer, contact Dorothy Wiley, RN PhD by phone or text at 310-292-8466
Protocol ID: IRB#22-001512 UCLA IRB Approved Approval Date: 2/2/2023 Committee: South General IRB
Contact Info
Parents of Children with Down syndrome: The Role of Perceived Social Support, and Parental Stress on Parenting Style
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- The purpose of this study is to explore how perceptions of social support may be related to parenting style and parental stress.
- Parents of a child with Down syndrome are invited to participate in this study.
- If you decide to participate in this study, you will respond to several questionnaires that will be online in a web-based survey. You can complete the measures in about 20 minutes.
Questions? Contact Morgan Stohlman at mstohlma@kent.edu or Dr. Joshua Castleberry at jcastle4@kent.edu.
Contact Info
ASD Screening Tools in Down Syndrome
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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.
Contact Info
Parent Survey to Develop a Measure of Maladaptive Behavior for Down Syndrome
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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.
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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.
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Interested? Please click on the following link when you are ready to start the survey: https://redcap.link/BIDS1
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Thank you! Caregivers will be compensated for their time ($10). Caregivers completing the second survey will receive an additional compensation ($10).
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Questions? Please contact the Project Team at dsresearch@cchmc.org.
-
Si prefiere hacer la encuesta en español, haga clic aquí: https://redcap.link/BIDS1espanol
Contact Info
Cancer Screening for Patients With Intellectual Disability: Exploring Parent and Caregiver Perspectives
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Are you the family member or caregiver for a patient with intellectual disability? We're looking for experiences and perspectives on cancer screening. If you and the patient are both 18 years or older, we want to hear from you!
This survey is a one-time digital questionnaire that takes about 20 minutes to complete. The survey should be completed by the parent or caregiver of the patient with intellectual disability. The patient with intellectual disability is welcome to help their parent or caregiver complete the survey if desired. The survey can be accessed through RedCap at the following link: https://redcap.healthsciencessc.org/surveys/?s=L8MX44TYMHFHN3YE
Contact Info
Birth-4 year olds
DS-Connect: The Down Syndrome Registry
Learn more
What is DS-Connect®?
DS-Connect•: The Down Syndrome Registry is a voluntary, confidential online survey. It collects basic health information about people with Down syndrome.
Visit DS-Connect to find additional studies across the country looking for participants.
Contact Info
Infant Brain Imaging Study for Down Syndrome
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- This study’s goal is to increase our understanding of how the brain is affected in infants with and without Down syndrome. This may in turn provide clues that could eventually help identify therapeutic targets for intervention for individuals with Down syndrome.
- Who is eligible? Families with an infant (6 months or younger) diagnosed with Down syndrome. Expectant parents are encouraged to contact us.
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About your visit: Your infant and a parent will:
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Travel to your region’s site when your infant is 6, 12, and 24 months old. Each visit includes developmental assessments and an MRI scan during natural sleep (no sedation).
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Receive reimbursement for study-related expenses and up to $300 compensation per visit.
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Website: www.dsstudies.com.
For more information please contact: ibis@wustl.edu
Development of Supported Stepping in Infants with Down Syndrome
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PURPOSE: To learn about the development of walking with mobility devices in infants and toddlers with Down Syndrome
WHAT IS INVOLVED: Tests of your child's motor skills and observation of your child taking steps on a treadmill and with a mobility device
WHO CAN PARTICIPATE: Children with Down Syndrome (10-22 months of age) who cannot walk independently
COMPENSATION: Families will receive $25 per 60-90 minute lab visit (up to 5 visits).
Contact Info
Investigating The Impact Of JASPER Behavioral Therapy In Children With Down Syndrome
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We are looking at the possible effectiveness of two different parent education programs that focus on social interaction, play skills, strategies for managing challenging behavior, and overall development.
This opportunity is for children with Down syndrome (Trisomy 21) who are between 36-78 months old and their caregivers.
This study is 100% virtual and can be done from home! Participation consists of 10 weeks of material via email or Zoom. Parent surveys and developmental assessments will be conducted at the start of the program, the end of the program, and 10 weeks follow-up.
Contact Info
BRIDGE Study (BRain Indicators of Developmental Growth)
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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.
Contact Info
Parent Survey to Develop a Measure of Maladaptive Behavior for Down Syndrome
Learn more
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
Contact Info
5-18 year olds
DS-Connect: The Down Syndrome Registry
Learn more
What is DS-Connect®?
DS-Connect•: The Down Syndrome Registry is a voluntary, confidential online survey. It collects basic health information about people with Down syndrome.
Visit DS-Connect to find additional studies across the country looking for participants.
Contact Info
Weight-Related Behaviors and Down Syndrome
Learn more
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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
Contact Info
Emotion Dysregulation Inventory (EDI) - Self-Report
Learn more
Research opportunity!
We need your help developing a new self-report questionnaire about managing emotions for teens and adults.
How can you participate?
We are seeking volunteers – individuals age 11+ with a diagnosis of an intellectual or developmental disability (IDD), such as Angelman, Down, Fragile X, Rett, Prader-Willi, or Williams syndromes, and their parents/caregivers – to complete online surveys.
Compensation will be provided.
For more info, emotionresearch@upmc.edu or 412-260-6593
This research study is being conducted by the University of Pittsburgh and funded by contracts from the National Institutes of Health.
Contact Info
Positive Mental Health for Youth with Intellectual Disability
Learn more
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.
Contact Info
Down Syndrome Umbrella Study
Learn more
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/
Contact Info
BRIDGE Study (BRain Indicators of Developmental Growth)
Learn more
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.
Contact Info
ASD Screening Tools in Down Syndrome
Learn more
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.
Contact Info
Parent Survey to Develop a Measure of Maladaptive Behavior for Down Syndrome
Learn more
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
Contact Info
The Relationship Between Language and Executive Function in Developmental Language Disorder and Fragile X Syndrome Over Time
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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.
Contact Info
Chronic Health Conditions in Down Syndrome-Associated Acute Leukemia
Learn more
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
Contact Info
The Down Syndrome Life Experience and Feelings Study
Learn more
Researchers at Virginia Commonwealth University are conducting a study to learn about the emotional and behavioral health of individuals with Down syndrome. They are looking for individuals ages 12-45 years and their caregivers to complete online surveys and an online interview as well as provide a painless DNA cheek swab sample that can be done at home and sent through the mail. Participants may be compensated for their time.
To learn more about the opportunity, visit HTTP://TINY.CC/LEAF_DS_VCU or email Ruth Brown at LEAFstudy@vcuhealth.org.
Contact Info
19-29 year olds
DS-Connect: The Down Syndrome Registry
Learn more
What is DS-Connect®?
DS-Connect•: The Down Syndrome Registry is a voluntary, confidential online survey. It collects basic health information about people with Down syndrome.
Visit DS-Connect to find additional studies across the country looking for participants.
Contact Info
Emotion Dysregulation Inventory (EDI) - Self-Report
Learn more
Research opportunity!
We need your help developing a new self-report questionnaire about managing emotions for teens and adults.
How can you participate?
We are seeking volunteers – individuals age 11+ with a diagnosis of an intellectual or developmental disability (IDD), such as Angelman, Down, Fragile X, Rett, Prader-Willi, or Williams syndromes, and their parents/caregivers – to complete online surveys.
Compensation will be provided.
For more info, emotionresearch@upmc.edu or 412-260-6593
This research study is being conducted by the University of Pittsburgh and funded by contracts from the National Institutes of Health.
Contact Info
Positive Mental Health for Youth with Intellectual Disability
Learn more
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.
Contact Info
Down Syndrome Umbrella Study
Learn more
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/
Contact Info
The Down Syndrome Life Experience and Feelings Study
Learn more
Researchers at Virginia Commonwealth University are conducting a study to learn about the emotional and behavioral health of individuals with Down syndrome. They are looking for individuals ages 12-45 years and their caregivers to complete online surveys and an online interview as well as provide a painless DNA cheek swab sample that can be done at home and sent through the mail. Participants may be compensated for their time.
To learn more about the opportunity, visit HTTP://TINY.CC/LEAF_DS_VCU or email Ruth Brown at LEAFstudy@vcuhealth.org.
Contact Info
The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR)
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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/.
Contact Info
Optimizing Language Outcomes for Young Adults with Intellectual and Developmental Disabilities: A Written Language Intervention Using Functional Texts
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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
Contact Info
Trial-Ready Cohort-Down Syndrome
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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.
Contact Info
Chronic Health Conditions in Down Syndrome-Associated Acute Leukemia
Learn more
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
Contact Info
30+ year olds
Down Syndrome Umbrella Study
Learn more
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/
Contact Info
DS-Connect: The Down Syndrome Registry
Learn more
What is DS-Connect®?
DS-Connect•: The Down Syndrome Registry is a voluntary, confidential online survey. It collects basic health information about people with Down syndrome.
Visit DS-Connect to find additional studies across the country looking for participants.
Contact Info
Emotion Dysregulation Inventory (EDI) - Self-Report
Learn more
Research opportunity!
We need your help developing a new self-report questionnaire about managing emotions for teens and adults.
How can you participate?
We are seeking volunteers – individuals age 11+ with a diagnosis of an intellectual or developmental disability (IDD), such as Angelman, Down, Fragile X, Rett, Prader-Willi, or Williams syndromes, and their parents/caregivers – to complete online surveys.
Compensation will be provided.
For more info, emotionresearch@upmc.edu or 412-260-6593
This research study is being conducted by the University of Pittsburgh and funded by contracts from the National Institutes of Health.
Contact Info
The Down Syndrome Life Experience and Feelings Study
Learn more
Researchers at Virginia Commonwealth University are conducting a study to learn about the emotional and behavioral health of individuals with Down syndrome. They are looking for individuals ages 12-45 years and their caregivers to complete online surveys and an online interview as well as provide a painless DNA cheek swab sample that can be done at home and sent through the mail. Participants may be compensated for their time.
To learn more about the opportunity, visit HTTP://TINY.CC/LEAF_DS_VCU or email Ruth Brown at LEAFstudy@vcuhealth.org.
Contact Info
Trial-Ready Cohort-Down Syndrome
Learn more
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.
Contact Info
Chronic Health Conditions in Down Syndrome-Associated Acute Leukemia
Learn more
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
Contact Info
The ABATE Study
Learn more
About 80 people with Down syndrome will take part in the ABATE Study. The study is testing an investigational vaccine for Alzheimer’s disease in people with Down syndrome. Contact: https://www.abate-study.com/ to find the study location nearest you.
We want to see:
- If the vaccine is safe
- How the vaccine works inside the body
- If it helps get rid of amyloid buildups
- If it slows down memory loss and thinking problems
You may be able to join this study if you:
- Have Down syndrome
- Are between 35 and 50 years old
- Have a study partner
Contact Info
Professionals
Survey of feeding practitioners working with children with intellectual and developmental delays
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To qualify, you must be a practitioner with experience in working with children with development disabilities and feeding difficulties and live in the United States. This will include speech language pathologists, occupational therapists, dietitians, general practitioners, nurses, and other occupations.