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Project INCLUDE Introduces Remote Testing Kits Due to Pandemic Constraints


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Thursday, January 14, 2021

Boys Town National Research Hospital® was in the middle of research for Project INCLUDE, funded by the National Institutes of Health (NIH), when the pandemic upended how many things were being done nationally, locally and at Boys Town.  

Project INCLUDE measures language, problem solving and hearing abilities in background noise for children with Down syndrome to identify factors that contribute to successful listening in noisy situations – like classrooms. Because Project INCLUDE is conducting research with children who have Down syndrome, many of whom are medically fragile, project leader Heather Porter, Ph.D., knew they had to find alternatives to in-person research methods.

“Right in the middle of our Project INCLUDE research, the pandemic hit, and we had to switch to remote testing to protect our participants and lab staff," said Dr. Porter Research Scientist in the Human Auditory Development Lab.

The first remote project tried sending a program over the internet for test participants to download and use on their personal computer using whatever headphones they had at home. However, this system proved to be unreliable. Some participants had results that were very different from other participants. Although it was most likely because of the various types of computer hardware being used across the test population, the results couldn't fully be explained and alternative solutions were developed.

“We developed test kits that included all of the hardware and software needed for the study," said Dr. Porter.  “These kits are being delivered contact-free to each individual's home. The kits include an iPad, two sets of headphones and an instruction binder, plus sanitizing and screen wipes. Lab staff and participants have their safety concerns met. As a bonus, participants can complete the study at their convenience in their own homes. The response has been super positive."

Once the remote test kits were up and running, it was simply a matter of dropping them off, picking them up, sanitizing them thoroughly and repeating the process. Most importantly, it meant that Project INCLUDE could proceed safely for both participants and researchers.

Advancements in Adversity

The changes the pandemic instituted are only the beginning for Boys Town Hospital researchers. The challenges of 2020 have pushed forward new ways of doing things, research included, that may have positive impacts in the future.

“There's always been a push from the NIH to have larger groups of participants included in Down syndrome research, but it can be difficult because there are only so many participants available locally," Dr. Porter said. “Remote test kits have the potential to help us exponentially, allowing us to collect data from all over the country."

Families of children with Down syndrome are also being interviewed using secure web-based platforms to find out what about listening and communication is most important to them. That information will be included in Boys Town National Research Hospital's next grant submission to the NIH, along with the possibility of expanded research cohorts created by working remotely and conducting research nationwide.

Additionally, Boys Town Hospital is looking into various remote test kit configurations to further the ability of all research areas to continue conducting remote research during the pandemic and beyond.