Down Syndrome Studies

Brain Imaging Study for Adults with Down Syndrome

 

The Waisman Center is seeking adults with Down syndrome, ages 30 and above, for a research study involving an MRI and a PET scan to examine amyloid plaque in the brains of these individuals. Researcher Brad Christian, PhD, will look at the link between amyloid plaques and Down syndrome. Individuals with Down syndrome have an extra 21st chromosome, which contains the gene that makes these proteins and could lead to earlier development of Alzheimer's disease.

The study takes two days, with the first day spent reviewing the procedures, completing a caregiver questionnaire, and neuropsychological testing for the individual with Down syndrome. On the second day brain imaging studies are performed, including an MRI that takes 30 minutes and a PET scan that takes an hour. There will also be a blood draw. You can watch a video that shows the imaging procedures on the following link: www.waisman.wisc.edu/amyloid.

Participants will receive compensation for time and expenses. There are some funds available for families who live a few hours from the Waisman Center to travel to Madison and have an overnight stay to allow the two study visits to be on consecutive days.

Please call Renee Makuch at 608.262.4717 or toll-free at 877.558.7595 for additional information. The Waisman Center is located at the University of Wisconsin-Madison, and this study is being conducted in collaboration with the University of Pittsburgh Medical Center and the Down Syndrome Center at Children's Hospital of Pittsburgh.

PI: Brad Christian, PhD
Keywords: Down syndrome, Brain Imaging

Expressive Language Sampling in Down Syndrome

 

PURPOSE: To learn more about how spoken language samples can be used to measure change over time in the spoken language, problem solving, and behavior of individuals with genetic syndromes. In the future it is possible that measures of spoken language production may be useful as one way to learn whether different medications can help individuals with genetic syndromes to learn and use language more effectively. 

WHO: We are looking for boys and girls aged 6 to 23 years with Down Syndrome.

WHAT:  This is a longitudinal study which means we will ask you and your child to visit the Waisman Center three times over a 2-year time period.  At each visit, we will collect a language sample in three different ways; a conversation, looking at a picture book, and participating in a series of interactive activities with an examiner.  Additionally, we will ask you, the parent/guardian to fill out some questionnaires and participate in an interview about your child’s everyday living skills. You will be paid $50 for each visit as well as reimbursed for any traveling costs. 

Please contact our study coordinator, Susen Schroeder, for information at 608.263.5145 or sschroeder@waisman.wisc.edu

Principal Investigator: Audra Sterling, PhD
Key words: Down Syndrome, Speech and Language Development

Leisure Activity in Adults with Intellectual Disability

 

We are looking for adults with intellectual disability over the age of 30 years and their caregivers to participate in a study that will help us understand how leisure activity predicts healthy aging and well-being for adults with intellectual disability.

The study involves a 1.5-hour visit to the Waisman Center, your home, or disability center.  Both of you will complete questions about the leisure activity and well-being of the adult with intellectual disability.  You will also complete a 7-day daily diary together in which you will answer a short list of questions each day (takes 5-10 minutes per day).  You will each be paid $10 for participating.

If you are interested in being in this study or have any questions, please contact Iulia Mihaila at mihaila@wisc.edu or (608)262-8860.

PI: Sigan Hartley, PhD
Keywords: Down Syndrome, Fragile X Syndrome, Intellectual and Developmental Disabilities

Parenting and Language Learning in Young Children with Down Syndrome

 

If you have a child with Down syndrome between 2 and 5 years of age, you and your family are invited to participate in a research study conducted by Dr. Audra Sterling at the Waisman Center, University of Wisconsin – Madison.

The purpose of this study is to learn more about the relationships among parenting, social interactions, and language learning in children with Down syndrome. 

If you decide that you and your family would like to participate in this study, we will ask you to complete questionnaires related to your child’s development and daily behaviors, as well as your marital relationship and overall health.  We will come to your home and record your family as you interact during different daily activities, such as during making a snack together, playing and reading a story.  During our visit, we will also complete developmental assessments through interacting with your child.  Additionally, we will request that you use our audio recording device to record 1-2 evenings for three hours before bedtime.   Your family will be compensated $50 for your time.

If you are interested in this study or would like to learn more, please call the Study Coordinator at (608)263-5145 or email RIDDLL@waisman.wisc.edu.

PI: Audra Sterling, PhD
Key words: Down Syndrome, Family Studies, Parents, Speech and Language Development

Speech and Sound Reflection Study

 

The Vocal Tract Development Laboratory at the Waisman Center, directed by Dr. Houri K. Vorperian, is currently recruiting individuals of all ages to participate in a speech and sound reflection study. The lab is interested in characterizing the development of the mouth and throat structures in typically developing individuals and individuals with Down syndrome. The purpose of the lab's research is to understand how changes in the anatomy of the mouth and throat affect the production of speech sounds.

This current study includes a hearing screening and having your voice recorded while repeating sounds, words, and sentences. Eligible participants may also be asked to breathe into a tube. The tube makes clicking noises to measure the inside of the mouth and throat. Participants with recent head or neck imaging (CT or MRI scans) are highly desired, but those without imaging may still
participate. Compensation is provided for participation. Study duration is 30-60 minutes.

You can view this study's consent form as well as an informational flyer here:  http://www.waisman.wisc.edu/vocal/ongoing-studies.html

Please contact the Vocal Tract Lab at 608.263.5610 or email vtlab@waisman.wisc.edu if you have any questions or would like to schedule a visit.

PI: Houri K. Vorperian, PhD
Keywords: Down Syndrome, Infant and Child Development