Marie Moore Channell & Laura Mattie, PhDs

Marie Moore Channell, PhD, and Laura Mattie, PhDs, are Associate Professors in the Department of Speech & Hearing Science and the College of Applied Health Sciences. Dr. Channell's research focuses on the development of language, cognition, and social-emotional skills in individuals with Down syndrome or other neurodevelopmental disorders associated with intellectual disability (e.g., fragile X syndrome; autism spectrum disorder), particularly during middle childhood and adolescence. Her questions are framed by how skills in these domains work together to influence everyday communication in individuals with neurodevelopmental disorders. Dr. Mattie's research focuses on early social, cognitive, and communicative development in infants and young children with neurogenetic disorders (e.g., Down syndrome, fragile X syndrome, Williams syndrome) and autism spectrum disorders. Her work examines syndrome-specific patterns of early development and developmental trajectories.

Tell us briefly about your project “Autism Screening Tools for Down Syndrome.” 
People who have Down syndrome are almost ten times more likely to also have co-occurring autism compared to the general population. Thus, there is a critical need for reliable, valid autism screening, diagnostic, and symptom monitoring tools for people with Down syndrome. Our project aims to (1) evaluate psychometric characteristics of autism screening measures and (2) characterize autism profiles across the spectrum of Down syndrome. We will also explore the feasibility of tele-assessment for performance-based autism evaluations in children with Down syndrome. This NIH-funded R21 study is part of the NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project. Other collaborators include Dr. Amy Cohen at Illinois, Dr. Tracie Rosser at Emory University, and Drs. Luke Kalb and Natasha Ludwig at Johns Hopkins University/Kennedy Krieger Institute. 

Why did you decide to use Illinois REDCap for this project?
The study aims to enroll one of the largest samples of caregivers with Down syndrome, for a total of 500 families nationwide. Participation involves the completion of many different standardized questionnaires. To make the research participation process as easy as possible for our families, we chose REDCap, through which families can participate online. One of the biggest advantages of REDCap is that we could integrate all the different questionnaires into a single online platform so that participants only click one link to access everything. Traditionally, researchers would send families a separate link to each publishing company’s website to complete their online questionnaires. Families had to keep up with multiple emails and navigate different online platforms. By integrating everything into REDCap, we have significantly eased participant burden. 

This project has some unique challenges. What were those, and how did using REDCap help address those challenges?
One of the biggest challenges was developing the scoring algorithms. Some of the questionnaires have complex scoring rules that vary based on different participant characteristics (e.g., age). One questionnaire in particular—the Vineland Adaptive Behavior Scales—requires participants to answer certain items depending on their responses to previous items. Without using the publishing company’s online platform, we did not have access to their automated administration and scoring features and instead had to build them ourselves within REDCap. IHSI's Illinois REDCap team worked tirelessly with our graduate students to develop these scoring systems so that each individual participant only answers the questions necessary for them and so that our team does not have to manually compute every score for every participant.

Were there any REDCap features or modules your group found especially useful for this project?
All project staff complete both the required and optional REDCap training videos. These provide a good foundation for understanding the basics of REDCap. The online REDCap Help & FAQ pages are also quite useful. If we still had unanswered questions, the Illinois REDCap team, particularly Michelle and Heather, was very knowledgeable and answered all our questions quickly. In addition, we found the REDCap feature for creating calculated fields particularly useful for our project. Some of our questionnaires have complex scoring systems, so the ability to customize REDCap’s algorithms to automatically compute scores for each of our participants is an invaluable time-saving feature. 

Have you/your team received research-related training or support from the Illinois REDCap team? If so, how has this support affected what you/your team were able to accomplish? 
One of our students, Alex Barkhimer, was selected for the inaugural REDCap Certificate Series in 2021. This is a specialized training course hosted by the IHSI REDCap team to provide trainees with the skills to successfully “design, build, and manage advanced data collection projects in Illinois REDCap.” The REDCap training certificate benefited our entire project team because Alex was able to share the knowledge and resources she gathered from the training program. 

What do you want people to know about Illinois REDCap?
Illinois REDCap is highly customizable. It can be overwhelming to start a new project from scratch in REDCap when you don’t even know what features are available, much less which ones are right for your project. However, there are built-in layers of support. Illinois REDCap comes with video tutorials, live training sessions, and access to highly skilled support staff who understand the research process. Whenever our team wanted to know if something could be done, Michelle Lore and other IHSI REDCap team members would work with us to find a solution. REDCap is also great for the digitization of research records, not just data collection. The bottom line is if you are still unsure whether REDCap is right for your project, just ask!  

On October 26 at noon, Associate Professors Dr. Marie Channell and Dr. Laura Mattie will present a seminar about neurodevelopmental disabilities and the neurodiversity movement. Participants will learn about neurodevelopmental disabilities (e.g., autism, intellectual disability, learning disability, ADHD, communication-related disabilities), practical considerations when interacting with individuals who are neurodiverse, and ways to foster a neuroinclusive environment on campus. Register for Zoom details.