Join forces with researchers to help advance the understanding and treatment of autism. There are studies in our area that are ongoing and asking for participants.
These studies are critical to the advancement of therapeutic and educational tools that help our children. In choosing which studies may be appropriate for your child, read carefully the criteria to make sure your situation matches that of the study.
Each study provides contact information: please contact the study directly for more information on each.
Hair Follicle Study
A research study for Children with a Fragile X syndrome (FXS) diagnosis, or who are typically developing
What are we studying?
Fragile X syndrome (FXS) is the most common genetic cause of intellectual disability. FXS is caused by the loss of the ability to produce an mRNA called FMR1. mRNA is a molecule in the cell that carries information from DNA on how to make proteins. The protein that the FMR1 mRNA makes is called FMRP. FMR1 mRNA and FMRP are important for normal brain function. There are no current treatments for Fragile X syndrome.
Fulcrum Therapeutics , a small biotechnology company in Cambridge, MA is working on developing a drug to treat Fragile X syndrome by restoring production of FMR1 mRNA and FMRP. They need a way to measure whether the drug can restore production of FMR1 mRNA and FMRP.
We are working with Fulcrum Therapeutics on a pilot study to research methods for measuring FMR1 mRNA and FMRP. Usually this is done through a blood test. This research study will be looking at different types of samples – blood, hair follicles and cheek cells – to see how well they measure the levels of FMR1 mRNA and FMRP in children. We also want to learn the most tolerated method for repeated sample collection: hair follicles, blood, or cheek cells.
Who can participate?
We are looking for volunteers male and female.
Children between 3 and 12 years of age who:
- are male or female
- have a diagnosis of Fragile X syndrome
- have typical development.
How will participants be compensated?
Compensation will be provided for time and travel.
For more information, contact CANDI at 774-455-4100 or ChildResearch@umassmed.edu.
Health U – Weight Loss Study for Teens with Intellectual Disability
Health U. is a weight loss research 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. Eligibility criteria include, but are not limited to:
- Being a healthy person ages 14-22 with an intellectual disability.
- Meeting criteria for overweight or obesity.
- Medical clearance from a primary health care provider.
- Having at least one parent/guardian who is willing to participate in the study.
Health U. is a free and voluntary research study funded by the National Institute of Health (NIH) through the Shriver Center at UMass Medical School.
Do you think Health U. is right for you? Please call Melissa Maslin, Research Coordinator at 774-455-6540 or email firstname.lastname@example.org to find out more information.
Qualified participants may be eligible for compensation.
Children’s Mealtime Study
Who Can Participate?
We are looking for children ages 3-8 yrs who have intellectual/developmental delays (I/DD) OR who are typically developing.
Children’s Mealtime Study Overview
The goal of our study is to learn about children’s eating patterns, mealtime behaviors, and parent feeding practices. We are interested in having families participate regardless of whether they have concerns about their children’s nutrition.
What is involved?
The study consists of one (1) study visit that lasts approximately 2 – 3 hours and the completion of a 3-day food record at home.
At the study visit
- complete questionnaires on basic demographics, family information, children’s physical activity habits, mealtime routines, food intake, and mealtime behaviors
- complete questionnaires on their own food intake, feeding practices, and parenting stress
- be weighed and measured
- for parents of children with I/DD, parents will be asked to complete questionnaires and an interview about their child’s adaptive, developmental, and social behavior
- be weighed and measured
- if your child had I/DD, we will administer a cognitive test to confirm that he/she meets our study criteria
- while you are doing the questionnaires your child will be able to play or watch a DVD
- Parents will keep a 3-day food record, which involves writing down everything the child eats over three days. Instruction/teaching will be provided during the study visit.
- If there is another parent/adult in the home we will also ask them to complete a food frequency questionnaire that asks about their food intake/preferences, and to report their height and weight.
Parents and children are compensated up to $100 in gift cards for their participation in the study (up to $85 for parents and $15 for children).
We know that good nutrition is important for children’s health and development. In the Children’s Mealtime Study we are particularly interested in what affects the health of children with intellectual/developmental delays (I/DD). Our study seeks to learn about what children eat, their behavior at meals, and what family mealtimes are like. We will be studying both children with I/DD and typically developing children.
Dr. Linda Bandini, the study’s principal investigator, has 25 years of experience conducting research in nutrition and physical activity for children and adolescents.
Where does the research take place?
- Charlestown, MA at the UMass Medical School E.K. Shriver Center – 465 Medford St., Suite 500
- Worcester, MA at the UMass Medical School E.K.Shriver Center – 55 Lake Avenue North, S3-301
- Local library or your home
- At other designated locations
How do I learn more?
UMMS IRB Docket # H-00001420
Research Study: The Aviation Study
The Aviation study is a clinical trial of an experimental drug called R05285119, which is being developed as a possible treatment to improve social behavior and communication in people with autism spectrum disorder (ASD). Autism spectrum disorder is a group of brain development disorders that causes persistent difficulties in social communication and social interaction. Currently, there are no medications available to treat these core symptoms of ASD such as social behavior and communication deficits. R05285119 works by blocking a brain receptor of a hormone (the vasopressin receptor) that is associated with control of socialization, stress, anxiety, affection and aggression.
Participants are aged 5-17 with a diagnosis of ASD. Participation lasts for up to 39 weeks and for 24 of those weeks, participants will take daily doses of either the investigational study drug or a placebo (a look-alike) that contains no medicine. Participants and their parent or guardian will visit a study clinic around once every 6 weeks (about 7 times in total).
For more information please contact CANDI at 774-455-4100 or ChildResearch@umassmed.edu
Docket # H00012137
University of Massachusetts’ Child and Adolescent Neuro Development Initiative -CANDI
Learn more by reading about CANDI in their Brochure
UMass CANDI Study – Brain Imaging: A research study for Boys with Autism Spectrum Disorder or Typical Development.
CANDI Research Study: MRI with Children and Adolescents diagnosed with Fragile X or Down Syndrome
Docket # H00002894
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.
Purpose of the Study
This study is sponsored by the University of Massachusetts Center for Clinical and
Translational Science. The purpose of the study is to determine if we can find ways to help
children undergo MRI without needing to be sedated. We are especially interested in
learning ways to help children with developmental disabilities, such as Fragile X syndrome
and Down syndrome with having an MRI. We also hope to learn more about the features of
the brains of children and adolescents aged 7-17 with Fragile X or Down syndrome.
Participation in this study will last up to approximately 1½ months and requires 2 visits to the
University of Massachusetts Medical School. There will also be some activities that for you
to use at home with your child to prepare him or her for MRI. These activities take about 10
to 15 minutes and can be repeated as often as you feel necessary. For each visit to the
office, a small payment will be offered to offset travel expenses. All study-related evaluations
are provided at no cost.
Males or females between 7 and 17 years of age
Diagnosis of Fragile X syndrome or Down syndrome
Parent willing to assist with desensitization activities at home
If you are interested in learning more about this study, please contact:
Child and Adolescent Neurodevelopment Initiative (CANDI)
University of Massachusetts Medical School
Biotech One, 365 Plantation Street, Suite 100
Worcester, MA 01605-2397
(508) 856-5896 or ChildResearch@umassmed.edu
Mass General Hospital TRANSCEND
Mass General Hospital TRANSCEND Study
Healthy Children/ Children with Autism Spectrum
Disorders Ages 7 to 17
Needed for Research Studies