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Important Links and Documents
MDSC Research Council
The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities.
In addition to our own Medical & Scientific Advisory Council, MDSC collaborates with a number of organizations that focus heavily on research, including LuMind IDSC, MassGeneral Hospital Down Syndrome Program, Children’s Hospital Down Syndrome Program and the Down Syndrome Center at UMass Memorial Children's Medical Center.
Current Opportunities for Participation in Research Studies
Infant Screening Project
Boston Children’s Hospital Down Syndrome Program and the Boston Children’s Hospital Laboratories of Cognitive Neuroscience has an exciting new research opportunity called the Infant Screening Project.
The purpose of this research is to better understand early language and social communication development in children with Down syndrome by using developmental and behavioral assessments and brain activity (EEG) measurements.
To be eligible for participation, they are looking for children with Down syndrome/Trisomy 21 who are between 12-36 months of age.
The study will require you to come into lab for ONE visit, which will last about 3 hours long, and then to go home with a special device that will record your child’s speech samples for 16 hours.
Visits consist of several different things:
- They complete developmental assessments where an examiner plays with your child to see how your child is developing.
- Parents will complete surveys about your child’s development and medical history.
- They will be measuring your child’s brain waves using an EEG cap that sits on your child’s head, like a swim cap. This will allow them to look at your child’s brain response to different audio and visual stimuli so that they can better understand visual and language processing.
- They will use a special computer with an eye-tracking device which allows them to see where your child is looking when they show pictures on a computer screen.
- After your visit they will ask you to bring home small recorders called Language Environment Analysis (LENA) devices that your child wears to record the sounds he or she hears. LENA technology records the frequency of speech during conversations and will be collected at your home (each device will record up to 16 hours).
Follow this link to see what a visit to the Labs of Cognitive Neuroscience looks like! They will reimburse parking at Boston Children’s Hospital or train passes and families will also receive a small toy and cash reimbursement after the visit as a token of their appreciation.
If you are interested in participating or would like to learn more, please contact the researchers by emailing email@example.com or calling 617-919-6809.
Caregiver Survey on Sleep Apnea in Down Syndrome
They are seeking at least 500 parents and caregivers of people with Down syndrome and sleep apnea for 15 minutes to complete this survey on their knowledge of sleep apnea - diagnosis, treatment options, and compliance - to evaluate the impact care management has on families.
All personal identifiable information (PII) in this survey will be de-identified from the survey results. The survey results will be shared broadly at Down syndrome conferences, with key Down syndrome research organizations, online communities, and published in a peer-reviewed journal.
By participating in this survey and providing your email address, you will be entered to win one of three $50 Amazon gift certificates.
If you have any questions or concerns about this survey please feel free to email the staff at LuMind IDSC at LuMindIDSC@lumindidsc.org or Cincinnati Children's Hospital ORCRA@cchmc.org
Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR)
Do you have a loved one with Down syndrome who is over the age of 25? Or are you a person with Down syndrome over the age of 25? Recruitment is now open at Massachusetts General Hospital in Boston, MA for the Longitudinal Investigation For the Enhancement of Down Syndrome Research (LIFE-DSR) study – the first study run in the Down Syndrome Clinical Trial Network (DS-CTN). The study is expected to complete in 2021.
The LIFE-DSR study is an observational investigation with the goal to better understand the cognitive and behavioral changes along with the health issues found in adults with Down syndrome as they progress toward Alzheimer’s disease.
The study is recruiting adults 25 years of age or older and each participant will undergo a baseline evaluation followed by a 1-year then a 2-year follow-up visit. Each participant will undergo a routine health exam including blood collection and will take cognitive and behavioral evaluations at each visit.
To learn more, visit http://www.ds-ctn.org/LiFE-DSR.html
Developing a Peer Mentoring Intervention for Young Adults with Intellectual/Developmental Disabilities and Co-Occurring Mental Health Conditions
Are you a young adult ages 16-23 with a developmental or intellectual disability? Do you have a mental health condition?
Can behavioral therapy help children with Down syndrome learn? Help researchers at Boston Children's Hospital Down Syndrome Program find out!
Parent Attitudes Toward Enhancing Cognition and Clinical Research Trials in Down Syndrome
The Children’s Mealtime Study, located at the E.K. Shriver Center/UMass Medical School, is looking for children with Down syndrome, Fragile X, and/or other intellectual disabilities ages 3-8 to participate in a research study on children’s eating patterns, mealtime behaviors, and parent feeding practices.
Study visits can be scheduled during the day or early evening on weekdays, weekends, and on some holidays. There are many convenient locations, including your home, where study visits can take place. You will be compensated for your time.
For more information visit http://shriver.umassmed.edu/research/health-promotion/childrens-mealtime-study?, or contact Rosalie: Phone: 774-455-6521 or Email:Mealtimes@umassmed.edu.
How Children with Down Syndrome Use Communication Technology
Kelsey Prena, a graduate student at Indiana University, is researching how children with Down syndrome use communication technology, with hopes that better educational software will be available for your children. Children with Down syndrome love playing video games on iPhones, iPads, computers, etc., and their passion might present an opportunity to improve education for children with Down syndrome. As a member of Massachusetts Down Syndrome Congress, you may partake in a 30 minute survey about your child’s video game use. You may participate even if your child does not play video games because the answers will be informative and contribute to a better understanding of video game play. Take the survey here.
Health U - Weight Loss Study for Teens with Intellectual Disability
Health U. is a weight loss study for overweight teens and young adults ages 14-22 who have an intellectual disability. Eligible participants will take part in a program that includes weekly to biweekly group and individual sessions focusing on losing weight through healthy eating and increasing physical activity in ways that are fun and achievable. Parents receive training on supportive behavioral techniques to encourage their son/daughter to meet nutrition and physical activity goals.
Sessions are 90 minutes, highly interactive, and led by nutritionists and lifestyle coaches.
CLASSES WILL BE HELD ON TUESDAYS IN DANVERS FROM 7:00-8:30pm.
Health U. is a free and voluntary research study funded by the National Institute of Health (NIH) through the Shriver Center in Boston and at UMass Medical School. Qualified participants may be eligible for compensation.
Project Play seeks to evaluate all children’s play as a developmental process across the age span of
Karin Lifter, Ph.D. and her research team from the Department of Applied Psychology at Northeastern University are currently looking for families who live in the Boston metropolitan area and who have a child who is developing with a delay. Their goal is to develop a user-friendly instrument that teachers and providers can use to evaluate a child’s progress in play, and particularly for children with delays and disabilities. The ultimate goal of their instrument is to be able to evaluate children’s play for the purposes of designing interventions for them.
Clinical Study of Tongue Pace Maker System (The Hypoglossal Nerve Stimulator) in children ages 12 to 21 with Down Syndrome and Severe Obstructive Sleep Apnea
This research is being conducted at Massachusetts General Hospital and Massachusetts Eye and Ear Infirmary by Drs. Hartnick, Diercks, Keamy, Kinane, Schwartz, and Skotko. These healthcare providers are interested in providing not only the best care for patients with Down syndrome but also in promoting research to understand and find better ways to treat their medical conditions.
The team is studying new ways to treat obstructive sleep apnea in children and young adults with Down syndrome who have persistent sleep disordered breathing despite prior tonsillectomy. They will be investigating whether placement of a surgically implanted nerve stimulator, similar to a pacemaker, is safe and effective in relieving airway obstruction during sleep. This therapy has already been tested and approved for use in adults meeting specific criteria. The purpose of this notice is to inform you about the study. Participation is voluntary. Whether or not you decide to participate will have no effect on your relationship with Massachusetts Eye and Ear Infirmary and/or Massachusetts General Hospital as a patient. 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.
Project TEAM Study Looking for Teens and Young Adults Ages 14 - 21 with Developmental Disabilities
Project Team (Teens making Environment and Activity Modifications) is looking for teens and young adults ages 14- 21 with developmental or intellectual disabilities.
Young people and their parents will complete questionnaires and assessments about the physical and social environment, the activities they do, and how they feel about themselves.
Questionnaires will be completed three times over four months. After the first meeting, each participant will receive a $50 gift certificate to try a new activity, like going to the movies or a restaurant. Participants will also receive gift certificates when they and their parents complete the questionnaires: $25 after the second session and $30 after the third session.
Jessica Kramer is in charge of the study at Boston University and can be contacted at firstname.lastname@example.org, 617- 353-7522, or 617-353- 2702.
Click here for a flyer with more information.
MRI with Children and Adolescents diagnosed with Fragile X or Down Syndrome
The Child and Adolescent Neurodevelopment Initiative (CANDI) at the University of Massachusetts Medical School is conducting a research study focused on Magnetic Resonance Imaging (MRI) with children diagnosed with Fragile X or Down Syndrome.
This study is sponsored by the University of Massachusetts Center for Clinical and Translational Science. The purpose of the study is to determine if there are ways to help children undergo MRI without needing to be sedated, and to learn more about the features of the brains of children and adolescents aged 7-17 with Fragile X or Down syndrome.
Participants in this study must be between 7 and 17 years of age, have a diagnosis of Fragile X syndrome or Down syndrome, and have a parent willing to assist with desensitization activities at home.
Evaluating the “Family-Centered” Approach of Pediatric Multidisciplinary Down Syndrome Clinics: A Parent’s Perspective
Devon Haynes, a graduate student in the genetic counseling program at the University of South Carolina School of Medicine, is conducting a research study to ascertain the level of psychosocial support offered to families of pediatric patients with Down syndrome by their health care providers. This research study looks at parent’s perspectives on the support given to their family through their child’s pediatric health care. The study involves taking a survey that is online and is meant to be filled out individually by either parent.
The survey contains a series of questions about your child with Down syndrome (under age 21) and the types of medical providers he/she sees on a regular basis. The survey also asks about opinions and perspectives on the level of psychosocial/emotional support that is offered by your child’s pediatric health care providers.
All responses from the surveys will be kept anonymous and confidential. The goal of the study is to collect information which will allow health care providers to provide more "family-centered" and psychosocial care to families affected by Down syndrome and other genetic conditions.
To take the survey, go to https://www.surveymonkey.com/s/psdsparentperspective.
Prenatal MRI Study of Fetuses with Down Syndrome
The Mother Infant Research Institute at Tufts Medical Center is conducting a fetal brain imaging study to help understand more about brain development in fetuses with Down syndrome in ongoing pregnancies.
This study uses a safe, non-invasive MRI scan to look at the fetal brain. MRI studies make high-resolution pictures of the fetal brain.
To be eligible to participate in the study, you must have received a prenatal diagnosis of Down syndrome or have had a fetal DNA test result that is strongly suspiciaous of Down syndrome. Click here for a flier or contact Dr. Tomo Tarui at email@example.com or 617-636-5729 for more information.
Dr. Brian Skotko and his research team from the MassGeneral Hospital Down Syndrome Program are starting another study drug trial. In this clinical trial, an investigational medicine, not yet approved for sale by the FDA, will be studied in people with Down syndrome who meet eligibility criteria. This study drug is hoped to improve the cognitive capacities in some people with Down syndrome.
Up until now, opportunities for people with Down syndrome to participate in research have been scant, for a variety of reasons. For the first time, study drug trials are now available to people with Down syndrome. Enhancing the well-being of all people with Down syndrome remains the greatest aim of all of the research opportunities that we offer through the Mass General Hospital Down Syndrome Program.
There are a limited number of spots for this clinical trial, and eligible patients are screened in the order in which they contact us.
This study is being funded by Elan, the developer of the drug in the upcoming study. The upcoming clinical trial will evaluate the safety of the study drug and how it works in the body. The study will take place over 10 weeks and will include 5 clinic visits.
To see if your family member is eligible to take part in the study, please review the questions here: www.massgeneral.org/downsyndromeresearch.
If you would like your family member to participate in this study, or if you have further questions, please contact Mary Ellen McDonough, RN, Senior Clinical research Coordinator in the MassGeneral Hospital Down Syndrome program at, 617-643-5571 or firstname.lastname@example.org.