DSC News

Spotlight On: Research Studies benefiting Down syndrome

Spotlight On: Research Studies benefiting Down syndrome

Always happy to advance scientific knowledge, we interviewed several researchers in the Puget Sound area – Nicole Simard, Roxanne Hudson, and the DSC Learning Program’s own Katy Bateman – who are recruiting participants with Down syndrome for their studies.  Focused on enhancing our understanding and finding ways to provide better tools for individuals with Down syndrome and their families and caregivers – each research project is an exciting new venture and opportunity for us!  Some are specific to individuals with Down syndrome (Ds) and some expand to individuals with any intellectual or developmental disability (IDD).

Families wo have already participated in the studies are enthusiastic about encouraging participation. DSC members Gail Lee, Alison Winfield, and Alison Burchett gathered their kids to for the brain development study.  “By participating in the study, I am hoping to help doctors understand more about Ds and how to help all people with Ds live their best lives” says Alison Winfield. Gail Lee adds that they all “enjoyed contributing to science with the bonus of a fun trip with friends to Utah! These kids were rock stars, especially in encouraging each other for the challenging MRI.” Alison Burchett’s son is also participating in the reading development project, “It’s coordinated with his teachers at school, so it fits seamlessly into his academic plan.”

Read on to learn about 4 different projects and see if you or your child qualify to participate!

UW Reading Development Project

What is the purpose of this research? The purpose of the project, which is the first of its kind in the nation, is to address the large knowledge gap about reading development in children with intellectual and developmental disabilities.  This will help their teachers better understand what to expect from their students and have a metric to compare their progress against.  In order to do this, we seek to understand the reading developmental trajectory of students with significant support needs in cognition and adaptive functioning, predictors of their later reading success, and the instructional context they are in. 

How will this benefit the community of individuals with Ds/IDD?  For too long, we have had excessively low expectations for learners with intellectual and developmental disabilities.  As teachers have focused more and more on reading intervention for this population, it is clear that we need more research to understand what reading development looks like in this group of children.  As well, we will use the information from this study to develop a reading intervention that we expect will be more effective than the small number of options that exist today.  Roxanne Hudson and Carly Roberts both prepare special education teachers, and we will use the information from this study to prepare more informed teachers who will do a better job of teaching children with IDD in the Puget Sound region.  

What makes this study unique?  There are several aspects to this study that make it unique.  First, the research on students with IDD primarily consists of European children residing outside of the United States who speak a language other than English. Since predictors of reading success can differ depending on language of instruction, little is known about the reading development of students with IDD in the U.S. Without this important knowledge, it is difficult to design effective interventions for evaluation. This is the first study of its kind in the U.S. There has been no large longitudinal study of reading development in the United States before now. 

What will participants and their families receive in joining the study?  A yearly report of reading assessment information that, with parent permission, will be shared with their child’s teacher to help improve their education.  $50 gift card as a thank you for their time and attention.  A choice of testing locations.

What else should families know about this study? The study requires a lot of assessment, but unlike children who are typically developing or have a learning disability where these ideas are well known, this type of research has never been done with children with IDD before.  We need to get a clear picture of who the children are in reading and language. Once kids qualify, we will assess them once or twice a year beginning I fall of 2020.

Who can participate in this study?  We are recruiting children in kindergarten, first grade, and second grade now for screening this spring and then the full assessment in the fall.  We are looking for children with significant support needs in intellectual and adaptive functioning.  We will screen each child using the Vineland test of adaptive functioning with an online form parents can fill out.  Once the stay at home order is lifted, we will give an abbreviated IQ test.  Children with many types of disabilities may qualify, including multiple disabilities, developmental disabilities, Autism Spectrum Disorder, intellectual disability, and Down syndrome.

Where will the study take place?  We can do assessments in the parent’s choice of home, our testing office near the University Village, or a public library once the stay at home order is lifted. 

Who should I contact to participate in the research?  We have a parent information form that we use to collect information.  Here is the link.  Parents can also email us at [email protected].  We have a facebook page https://www.facebook.com/UWreadingdevelopmentproject and a website as well for more information.  https://education.uw.edu/reading-development-project

Infant Brain Imaging Study – Brain Development in Infants with Down Syndrome

What is the purpose of this research? The goal of our study is to increase our understanding of how the brain is affected in children with Down syndrome. This may provide clues that could eventually help identify therapeutic targets for interventions for individuals with Down syndrome.

How will this benefit the community of individuals with Ds? Our participants are benefited directly by receiving feedback from behavioral and developmental assessments that are similar to those provided by clinicians in the community. For the larger community this study holds the promise of expanding our understanding of the brain and behavioral development in children with Down syndrome and could provide insight into new therapies and ways to support optimal outcomes.

What makes this study unique? To our knowledge, this is the first study of its kind studying early brain development through MRI imaging in babies with Down Syndrome!

What else should families know about this study? Participants will complete developmental assessments (including an assessment of motor, language, and nonverbal problem-solving skills), questionnaires, and an MRI of the brain (during natural sleep) at 6, 12, and 24 months of age.

What will participants and their families receive in joining the study? Families will receive developmental feedback from assessments, and, if appropriate, referrals and recommendations for follow-up. They will also receive images of their baby’s brain from the MRI. They also receive $125 compensation for participating in the study and reimbursement for certain travel-related costs. 

Who can participate in this study? Infants with Down Syndrome between Birth and 12 months of age. We hope to enroll families by the time their baby is 6 months old, but if your baby is older study participation can begin at 12 months.

Where will the study take place? Behavioral assessments take place at the University of Washington and MRI scans at Harborview Medical Center. 

Who should I contact to participate in the research? i[email protected] or 206-543-2125 Please don’t hesitate to contact us with questions and to see if you qualify for the study! Click here for flyer.

Brain Development in School Age Children with Down Syndrome

What is the purpose of this research? Like the infant study, the goal of this study is to increase our understanding of how the brain is affected in children with Down syndrome. This may provide clues that could eventually help identify therapeutic targets for interventions for individuals with Down syndrome.

How will this benefit the community of individuals with Ds? Our participants are benefited directly by receiving feedback from behavioral and developmental assessments that are similar to those provided by clinicians in the community. For the larger community this study holds the promise of expanding our understanding of the brain and behavioral development in children with Down syndrome and could provide insight into new therapies and ways to support optimal outcomes.

What makes this study unique? There are very few studies that look at brain and behavioral development of individuals with Down syndrome.

What will participants and their families receive in joining the study? Families will receive developmental feedback from assessments, and, if appropriate referrals and recommendations for follow-up. They will also receive images of their child’s brain from the MRI, which our school-age participants have loved seeing! They also receive $100 compensation for participating in the study and reimbursement for some travel-related costs.

What else should families know about this study? Participants complete a behavioral testing assessment and an MRI brain imaging assessment. The behavioral assessment includes tasks that assess problem solving, academic skills, motor development, and emotional functioning. At the behavioral assessment, children practice the MRI in a pretend MRI scanner with a trained behavior specialist to simulate the experience of an MRI.  The MRI brain imaging assessment takes place when the child is awake at Harborview Medical Center or the University of Utah. If participants travel to Utah, the cost of flights, hotel and car rental will be reimbursed.

Who can participate in this study? Children from 7 to 11 years of age with Down syndrome.

Where will the study take place? Behavioral assessments take place at the University of Washington. The MRI may take place at Harborview Medical Center or the University of Utah. 

Who should I contact to participate in the research? i[email protected] or 206-616-8839. Click here for flyer.

Meeting the Need: Increasing Access to Applied Behavior Analysis Services in Washington State

What is the purpose of this research? The purpose of this research is to increase access to ABA services for children with a diagnosis that falls outside of the autism spectrum. Because insurance covers ABA for ASD diagnosis, barriers and challenges are present that inhibit many families to access intervention shown throughout research to increase quality of life for children with disabilities. The purpose of this research is to provide parents with strategies and skills rooted in the principles of ABA to increase quality of life at home. Families of children with disabilities report higher levels of stress, anxiety, and depression. My hope is that this intervention provides families with a social network of other parents navigating similar situations.

How will this benefit the community of individuals with Ds/IDD? Strategies and skills taught during this intervention will target behavior. Especially with children home due to our current health crisis, families are reporting increases in challenging behavior as common daily routines are turned upside down. This intervention aims to provide families with skills to prevent and respond to challenging behavior in their home. Additionally, this intervention aims to create a social network for families. my hope is that a community of support is developed. It is difficulty navigating the many services children with developmental and intellectual disabilities receive. I want families to know that they have a group of people behind them ready to support them as they navigate similar experience beyond this parent coaching intervention. We are all in this together.

What makes this study unique? It is difficult to access ABA for the down syndrome community due to insurance coverage. Additionally, this intervention is online. Participants from around the state are able to attend and participate.

What will participants and their families receive in joining the study? Increased knowledge and a community of support!

What else should families know about this study? The coaching spans 16 weeks, starting May 13th, on Wednesday nights from 7-8.

Who can participate in this study? Families of children 1.5-8 years of age who are diagnosed with a developmental or intellectual disability who do not have access to ABA services

Where will the study take place? Zoom! – an online conference format.

Who should I contact to participate in the research? Katy Bateman [email protected] (Katherine Bateman, Ph.D., BCBA-D). Click here for flyer.