For Families and Self-Advocates: Research for individuals with Down syndrome is important. Through research, medical professionals are finding better treatments for various underlying conditions most prevalent in individuals with Down syndrome such as sleep apnea, congenital heart conditions, and Alzheimer’s Disease. These breakthroughs help increase life expectancy for individuals with Down syndrome, and can also help increase independence. Below are current research trials, studies, and surveys taking place across the United States.
For Researchers: Is there a research study you would like us to share with the Down syndrome community? You can now complete an online form and upload your materials for us to share!
CURRENT STUDIES
Parent/Caregiver Study: St. Jude Children's Research Hospital: Neurocognitive and Quality of Life Outcomes in Individuals with Down Syndrome
St. Jude Children’s Research Hospital is studying neurocognitive and quality of life outcomes in individuals with Down syndrome and a history of childhood cancer. They want to learn if cancer treatment changes thinking and learning, behavior, and quality of life for cancer survivors. They will do this by comparing data collected from caregivers of individuals with Down syndrome with and without a history of childhood cancer. They are currently recruiting caregivers of individuals with Down syndrome and no history of childhood cancer for this part of the study.
Why: The study aims to better understand if cancer treatment changes thinking and learning, behavior, and quality of life for cancer survivors with Down syndrome.
Who: Parents of individuals with Down syndrome with no history of childhood cancer. Must speak English, Spanish, or French.
What: The following is a list of activities that will happen during the study:
- You will be asked to complete surveys that ask questions about your child’s thinking,learning, behavior, and quality of life. Surveys can be completed on a computer, by mail, or by phone.
- You will be asked to complete surveys 3 times over a period of 3 years.
Compensation: Participants will receive a $50 gift card for each time point completed (so up to $150 total).
Questions: If you have questions about the study or would like to enroll, please contact the study coordinator at [email protected] or 1-833-591-0724.
Adult Study (35-55 yrs): HERO Study for Alzheimer's Disease
The HERO study is a clinical trial for people with Down syndrome who are between 35 and 55 years old. Doctors and scientists are researching a new study medicine called ION269 for adults with Down syndrome who might get Alzheimer’s Disease. Alzheimer’s Disease is a brain disease that causes problems with thinking, learning, and remembering. Participating in the HERO study could improve our understanding of how to maintain memory and help individuals with Down syndrome in the future.
Why: The investigational study medicine called ION269 hopes to protect the brain by telling it to produce less amyloid beta and potentially help people with Down syndrome one day by slowing down or preventing the development of Alzheimer’s Disease.
Who: People with Down syndrome between the ages of 35 and 55 and accompanied by a Study Partner age 21+ (ie: parent, caregiver, legal guardian).
What: Participants and their study partner will visit the study clinic for health checks for 3 months during the initial pre-screen phase. Then participants and their study partners visit the study clinic about 10 times over a nine month period with all visits including more health checks like those from the screening period. Over the duration of the treatment period, participants will undergo 4 injections in the lower back. The study medicine will be injected during the first lumbar puncture only. Participants may get medication to stay comfortable during the lumbar puncture. Lastly, after the last Treatment Period visit, participants and study partners receive 2 more calls from the study doctor and complete 1 more visit to the study clinic for final health checks.
Questions: For more information about the HERO study including how to participate, visit: www.hero-study.com.
Adult Study (25+ yrs): Alzheimer Biomarker Consortium-Down Syndrome (ABC-DS)
The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) is a study funded by the National Institute on Aging (NIA), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institutes of Health (NIH) INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project. The goal of ABC-DS is to follow a cohort of adults with Down syndrome over time to identify early biomarkers that may herald the onset of Alzheimer’s disease. The investigators hope that these biomarkers can be useful to inform clinical trials and improve the quality of life in people with Down syndrome and for the general population.
Why: The study aims to better understand the connections between Down syndrome and Alzheimer’s Disease.
Who: People with Down syndrome age 25 and older accompanied by a Study Partner (ie: parent, caregiver, legal guardian).
What: Participants will visit one of the research sites to complete puzzles and games. During the visit there will also be pictures taken of your brain, a blood sample and a general physical examination.
Compensation: Participants will be compensated for their travel and time.
Questions: For more information about the ABC-DS study including how to participate, visit www.abc-ds.org.
Adult Study (Ages 35-50): ABATE Study for Alzheimer's Disease
Researchers across the U.S., U.K., and Spain are conducting a study to test a new vaccine against Alzheimer’s disease.
Why: Researchers want to see if the vaccine is safe. They also want to see if the vaccine slows the progression of Alzheimer’s disease in people with Down syndrome.
Who: You may be able to join this study if you:
• Have Down syndrome
• Are between 35 and 50 years old
• Have a study partner (a study partner is someone who could support you during your participation. It could be a family member or relative close to you, or a caregiver.)
What: The study treatment, ACI-24.060, is a new vaccine which is not yet on the market. It may help to remove amyloid in the brain. This could slow down memory loss and thinking problems.
In the ABATE Study, you will receive either the vaccine or an inactive vaccine (also called placebo). This is so we can see how the vaccine affects your body. Neither you nor the study team will know which vaccine you are getting.
The study lasts for about 2 years and is split into 3 parts.
Parent Study (with Children Ages 1-17): UCI INCHES: Memory of Important Life Events (MILE Study)
Researchers at the University of California Irvine (UC Irvine) are conducting a study to learn more about how parents process and reflect on their experiences with their child with Down syndrome.
Who: You may be able to join this project if you have a child with Down syndrome between 1-17 years of age and both parents:
- were present at their child’s birth
- are willing to complete online questionnaires
- are willing to participate in a 2.5 hour video chat interview
- have never participated in a study in which they discussed their child’s Down syndrome diagnosis, birth, or most recent birthday with a researcher.
What: Parents will complete online questionnaires and a 2.5 hour video chat interview. Parents will be interviewed individually and together.
How to participate: Visit the link below to get started.
Questions:
Angela F. Lukowski, Ph.D.
Associate Professor
Department of Psychological Science
Email: [email protected]
Phone: 949-923-0331
Adult Study (Ages 18+): Beckman Institute: Speech Accessibility Project
Use your voice for good! Help make voice recognition technology more accessible for people with disabilities!
Who: You may be able to join this project if you:
• Have Down syndrome
• Are at least 18 years or older
What: Record your speech from the comfort of your home. Mentors from the University of Illinois are ready to help you through the participation process online.
How to participate: Visit the link below to get started. (Note: Residents of Illinois, Texas, and Washington are ineligible to participate in this project.)
Questions:
Email:[email protected]
Phone: 217-244-7700
Parent/Caregiver Study: University of Maryland Baltimore: Grief and Bereavement in Children with Intellectual Disabilities
Researchers at the University of Maryland Baltimore are conducting a study to understand more about how children with intellectual disabilities grieve after the loss of someone in their life.
Why: Researchers are interested to learn more about how to support other children in similar situations.
Who: Parents/guardians over age 18 who have a child with an intellectual disability and the child was between the ages of 5-17 when they experienced the death of someone significant in their life (such as a parent, sibling, grandparent, or friend). Additionally, the death was at least 6 months ago and no longer than 3 years ago.
What: Participants will be interviewed for approximately one hour. Interviews will be conducted by video or phone. Your child may optionally join for a short portion of the interview.
Compensation: You will receive a $25 gift card for your participation.
Questions: If you are interested in participating or have any questions, please email [email protected] or call 240-242-7424 for more information.
Pediatric Study (10-22mos): University of Southern California: Walking Development
Researchers at the University of Southern California (USC) are conducting a study to learn about the development of walking with mobility devices in infants and toddlers with Down syndrome.
Why: Researchers are interested in learning more about infants’ ability to take steps with support before they can walk on their own. This will help them to design an intervention for infants with Down Syndrome to help them learn to walk sooner.
Who: Infants who have a diagnosis of Down Syndrome, are between 10-22 months of age, and are not able to walk independently. If your child is younger than 10 months, we can schedule a visit a few months ahead!
What: If you choose to participate, you will visit the lab (see address below) up to five times throughout a year. At each visit, at video recording will be taken of your child taking steps on a treadmill and walking with a mobility device called a gait trainer. A test of your child’s motor skills will also be performed. Each visit takes about one hour.
Where:
USC Center for Health Professions
1540 Alcazar Street
Los Angeles, CA 90033
Compensation: You will receive a $25 Amazon gift card for each visit (up to $125 total) plus complimentary parking.
Questions: If you are interested in participating or have any questions, please contact us at [email protected] or (323) 442-3119.
Adult Study (18-39yrs): Drexel University: Project ASPIRE
Project ASPIRE: Assessing Skills that Predict Independence and Readiness for Employment for Adults with Down Syndrome
Researchers at Drexel University are conducting a study to understand more about cognitive and behavioral factors that are associated with vocational outcomes and independent living skills among young adults with Down syndrome.
Who can participate?
To participate, you must be the family member of an adult with Down syndrome (who is between the ages of 18 and 39 years).
Where does the study take place?
All activities are completed online.
What can I expect to happen in this study?
You will be asked to answer questions about your family member’s behavior, daytime activities, and your family’s background. You will be compensated for your time with a gift card.
How long am I part of the study?
Participation takes approximately 1.5 hours.
I want to learn more. Who do I contact for more information?
If you want to determine if you are eligible to participate and begin to complete study procedures, select the study link or scan the QR code on the downloadable file below.
Questions:
If you have questions or want to contact the study Principal Investigators, Dr. Nancy Raitano Lee, and Dr. Gregory Wallace, please contact the study via email ([email protected]) or phone (215.553.7164).
Pediatric Study (9-18yrs): Universities of Alabama and Nebraska: Reading Skills Study
The University of Alabama and the University of Nebraska are looking for children and adolescents between the ages of 9-18 with Down syndrome to complete language and reading tasks to better understand reading abilities, including both strengths and weaknesses.
About the Study: We can travel to participants anywhere in the United States! Participants will complete reading, language, and cognitive assessments. Also, parents/primary caregivers will complete a background questionnaire. This is an in-person study. This study is funded by the National Institutes of Health (NIH).
Who can participate?
Children and adolescents 9 to 18 years old who are diagnosed with Down syndrome.
Children and adolescents 9 to 18 years old who are diagnosed with Down syndrome.
Will you be paid to be in this research study?
Families will receive a $40 gift card.
Families will receive a $40 gift card.
To Participate/Learn More: For more information, email: [email protected] or [email protected].
Pediatric Study (5-17yrs): Multi-site: Down Syndrome and Sleep Apnea Study (DOSA)
Why is this research being conducted?
This research study (sometimes known as a clinical trial or clinical study) is being conducted to show how 6 months of oxygen treatment while sleeping affects your sleep, quality of life, your breathing, your heart and if it makes you feel better. Researchers also want to see if the oxygen helps decrease the severity of your obstructive sleep apnea (OSA).
Who can participate?
Children and teens 5 to 17.9 years old who are diagnosed with Down syndrome and who:
•Have been diagnosed with OSA
•Have not been successful with CPAP or unable to use it
Children and teens 5 to 17.9 years old who are diagnosed with Down syndrome and who:
•Have been diagnosed with OSA
•Have not been successful with CPAP or unable to use it
Will you/your child be paid to be in this research study?
Participants will receive up to $735 for time and effort.
Participants will receive up to $735 for time and effort.
Where can I find additional information? For more information, please contact your closest recruiting site.
Study Sites and Contact Information:
1. Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Contact: [email protected]
2. Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Contact: [email protected]
3. Rainbow Babies and Children’s Hospital, Case Medical Center
Cleveland, Ohio, United States, 44106
Contact: [email protected]
4. Ann Arbor Hospital
Ann Arbor, Michigan, United States, 48109
Contact: [email protected]
5. Children’s Hospital of Los Angeles
Los Angeles, California, United States, 90027
Contact: [email protected]
6. East Virginia Medical Center
Norfolk, Virginia, United States, 23507
Contact: [email protected]
7. Seattle Children’s Hospital
Seattle, Washington, United States, 98105
Contact: [email protected]
Data Coordinating Center: Bringham and Women’s Hospital
Boston, Massachusetts, United States, 02115
Contact: [email protected]
Caregiver & ID/DD Study (18+yrs): University of Louisville: Relationship and Health Needs
Researchers at the University of Louisville Kent School of Social Work and Family Science are conducting a research study to learn about the relationship and health needs of adults with intellectual and/or developmental disabilities by interviewing them and their care providers (paid or family).
Who Can Participate?
- People over 18 years of age with an intellectual/developmental disability and your care provider who is with you for more than twenty hours per week and who is also willing to be interviewed.
To Participate/Learn More:
For more information, contact Jennifer Kendrick at [email protected].
Adult Study (18-26 yrs): Baylor University: Written Language Intervention Using Functional Texts
Learning to read is a lifelong process. As such, the Communication Sciences and Disorders department of Baylor University is conducting a study to evaluate the effects of a virtual literacy/reading intervention for young adults with intellectual and developmental disabilities. The results of this study will help to improve reading intervention practices and transition services.
In this study, participants will learn how to use reading strategies to help understand things that are read every day (e.g., text messages, emails, and written directions).Reading sessions will take place for approximately 12 weeks. Coordinators will do their best to schedule the sessions at a time that is convenient for you. It is expected that you will be enrolled in the study for approximately 9 months which includes pre-testing, the reading lessons, post-testing, and follow-up testing.
Who Can Participate?
- 18- to 26-year olds with intellectual and/or developmental disabilities
What will you do?
- Complete one-on-one twice weekly reading lessons on Zoom to learn and practice using reading comprehension strategies with functional texts like text messages and emails.
What will you receive?
- Participates will receive language literacy assessments and reports upon completion of the study as well as up to $225 over the duration of the study for completion of assessment visits and surveys.
To Participate:
If you are interested in participating, please let us know by (a) emailing us at [email protected] or (b) calling us at 254-710-2572. If you consent to participate in this study, it does not guarantee that you will be involved in the entire research study. If you consent to participate, we will conduct an initial session to determine whether you are eligible to continue in the study.
Questions?
Email [email protected]
Parent Study: Nova Southeastern University Florida: Impact of the Delivery Style of a Down syndrome Diagnosis on Familial Attitudes
The Nova Southeastern University of Florida research team is looking for parents of a child diagnosed with Down syndrome. The purpose of this study is to find out if the delivery of a Down syndrome diagnosis by a healthcare professional impacts familial attitudes. We hope to use the results of this study to identify the best practices for delivering a Down syndrome diagnosis, so families are well informed on their child’s condition and how to manage it.
Who Can Participate?
- Parents of a child diagnosed with Down syndrome by a healthcare professional.
What will you do?
- You will be taking a one-time, anonymous survey. The survey will take approximately 10 minutes to complete.
What will you receive?
- Participation is voluntary and no payment will be provided.
To Participate:
If you have read the above information and voluntarily wish to participate in this research study, please click on the following link for the REDCap survey:
https://redcap.nova.edu/redcap/surveys/?s=N9LJKHW88KAWY893
Questions?
If you have questions, you can contact Palak Bhargav, Rehan Contractor, Dr. Kristi Messer, or Dr. Jose Llanga at 813-406-9225, 813-420-2847, 954-262-1072, and 954-554-5609 respectively.
If you have questions about the study but want to talk to someone who is not a part of the study, please call the Nova Southeastern University Institutional Review Board (IRB) at: (954) 262-5369 or toll-free at: 1-866-499-0790 or email: [email protected].
Pediatric Study (2-5yrs): Boston Children's Hospital: BRIDGE Study
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.
Who Can Participate?
- 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.
For more information about the BRIDGE study, please call the Down Syndrome Program research team at (617) 919-6809 or email [email protected]. You can also download the flyer below:
Pediatric Study (3-6yrs): Boston Children's Hospital: Virtual JASPER Study
Researchers at Boston Children’s Hospital are conducting a study to investigate the impact of JASPER Behavioral Therapy in children with Down syndrome (ages 3-6). Participants and their caregivers will learn about child development, communication and social skills, managing challenging behaviors, and strategies for learning new skills.
There is no compensation for participating in this study. Participants can complete the study from home virtually in approximately 20 weeks.
If you’re interested in participating or have questions about the study, call 857-218-4779 or email: [email protected]. For more information, download the flyer below:
Pediatric Study (10-21yrs): Pediatric Hypoglossal Nerve Stimulation to Address Sleep Apnea
Doctors at Massachusetts General Hospital and Massachusetts Eye and Ear Infirmary are studying new ways to treat obstructive sleep apnea in children and young adults with Down syndrome who have persistent obstructive sleep apnea despite prior tonsillectomy.
They are researching how placement of an investigational surgically implanted nerve stimulator for the purpose of treating severe obstructive sleep apnea (OSA) improves the neurocognition and expressive language skills in children with Down syndrome, ages 10-21.
This therapy has already been tested and approved by the FDA for use in adults meeting specific requirements. This research is being conducted at Massachusetts General Hospital and Massachusetts Eye and Ear Infirmary by Drs. Hartnick and Skotko.
If you are interested in learning more about this study, and whether or not you/your child would be an appropriate candidate, please contact the research team by calling Dr. Hartnick at (617) 573-4206 or by email at [email protected].
Pediatric Study (ages 6-17 yrs): MOSAIC Sleep Apnea Study
Families in Arizona, NM, Utah, and So. California: The University of Arizona is seeking participants for a clinical trial of medications to treat obstructive sleep apnea in children age 6-17 with Down syndrome.
This study will investigate the use a combination of atomoxetine (a medication approved by the FDA in children for the treatment of ADHD) and oxybutynin (a medication approved by the FDA in children for overactive bladder). These medications, which have been shown to treat obstructive sleep apnea in a small study of adults without Down syndrome, are thought to treat obstructive sleep apnea by increasing airway muscle strength, which is known to be lower in children with Down syndrome.
The clinical trial will involve completing a total of 3 sleep studies over 3 months and taking study medications for a total of 2 months. Participants should be within driving distance of the University of Arizona in Tucson.
Children may be eligible if they have a diagnosis of Down syndrome (trisomy 21, but not translocation or mosaicism) and do not have any of the following:
- currently using and unable to discontinue PAP therapy
- premature birth < 37 weeks estimated gestational age
- seizure disorder requiring current use of medications
- untreated or inadequately treated hypothyroidism
- history of current, untreated depression
- history of liver disease
If you would like more information about the study, please contact Silvia Lopez at [email protected] for further information. Participants will be compensated for their time. This study has been approved by the University of Arizona Institutional Review Board.
Adult Study (25-65yrs): The Picower Institute for Learning and Memory at MIT: Light and Sound Stimulation Study
The Picower Institute for Learning and Memory at MIT is studying how the brain responds to light and sound stimulation in Individuals with Down syndrome.
People with Down syndrome, ages 25-65, who are interested in a one-time study visit (at MIT in Cambridge, MA) are invited to learn more.
For more information, download the flyer below:
[pdf-embedder url=”https://lumindidsc.org/wp-content/uploads/2022/07/mit_ds_advert_09.2021.pdf”]
OPEN SURVEYS
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