LuMind IDSC is working with local Down syndrome organizations to help families find and access specialized medical care for their loved one with Down syndrome. By completing this short survey, you can help identify current accessibility and barriers.
OPEN SURVEYS
COVID-19 and Down Syndrome: Vaccine Response Survey
We need your help!
More needs to be learned about COVID-19 and the related vaccine among people with Down syndrome. The Trisomy 21 Research Society (T21RS) has organized an international online survey to collect this information.
You are invited to complete this survey if you are a caregiver of a person with Down syndrome who has received the COVID-19 vaccine or who is eligible but does not plan to receive the vaccine.
The online survey:
- takes about 15-30 minutes to complete
- responses cannot be linked back to you (anonymous)
- questions ask about the person’s health, COVID-19, and responses to the vaccine
Please click on the following link to complete the survey in the language of your choice:
Thank you for your help to collect this important information for people with Down syndrome.
T21RS COVID Taskforce
Daycare accessibility and barriers for children with and without disabilities
This study explores caregiver experiences in accessing childcare. This study is being done in collaboration with Hamilton County Development Disabilities to investigate daycare accessibility and barriers for children with and without disabilities. We are interested in learning how to enhance access to daycare facilities, foster communication, build resources, and developing engagement among daycare providers and families.
CURRENT STUDIES
LIFE-DSR Study
The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome.
Learning more about the physiology of people with Down syndrome gives researchers better insight into the connection between Down syndrome and Alzheimer’s disease. LIFE-DSR aims to address the questions of why the rate of Down syndrome-related Alzheimer’s disease is so high, and what therapies and treatments can be developed to prevent it.
Individuals 25 years and older can consider joining the study.
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 Christopher_Hartnick@meei.harvard.edu.
Massachusetts General Hospital: Neuroimaging and EEG Research Study
Researchers at Massachusetts General Hospital are conducting a study to examine the effectiveness of transcranial photobiomodulation (tPBM) on improving language, memory and attention in adults with Down syndrome (ages 18-30).
Compensation: up to $1,245 for participating and a stipend of $525 for cost of transportation. Caregivers will receive a stipend of $525.
If you’re interested in participating call 617-724-4539 and download the flyer below:
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 slopez1@arizona.edu for further information. Participants will be compensated for their time. This study has been approved by the University of Arizona Institutional Review Board.
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:
Lurie Center for Autism Fluoxetine Study (Depression)
The Lurie Center for Autism is conducting a study designed to evaluate the effects of fluoxetine in individuals with Down syndrome. Participants must be adults between 18 to 45 years of age with DS who are experiencing symptoms of depression.
Participants will receive all study related evaluations at no charge. For additional information about study requirements and study procedures, please contact Dr. Robyn Thom’s study staff at (781) 860-1711 or LurieCenterResearch@partners.org.