Blake Unrein probably doesn’t realize that how he responded to catching a ball or walking a line might help other kids in the future.
“He just loved every minute of it,” said his mom, Janel Unrein.
Thirteen-year-old Blake has Down syndrome and has been part of physical therapy professor Ken Pitetti’s research into developing a manual for testing the balance and coordination of children with intellectual challenges.
Pitetti is one of several researchers from Wichita State University and the University of Kansas School of Medicine-Wichita who rely on human subjects for their studies.
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Most people understand the importance of human subjects to test new drugs in clinical trials, but people are needed for studies and research in many other areas also. Current local research includes studying human-computer interaction, the best way to get people with chronic leg pain to exercise and the development of a lab test to diagnose bipolar disorder.
“We add to the understanding of a variety of different areas,” said Mike Rogers, a WSU professor and chairman of the university’s Institutional Review Board, which reviews and monitors all research using human subjects, including simple surveys, at WSU. The board reviews about 30 to 40 research plans a month, he said.
“To build new knowledge, research has to continue,” he said.
Wide range of people
To ensure studies are ethical and that no one will be put at risk, any organization or institution, such as WSU and the KU School of Medicine-Wichita, that does research involving human subjects must have an institutional review board approve each proposed study. According to federal guidelines, the group must include someone from outside the organization and a nonscientist, Rogers said.
Researchers must outline what they plan to study and how and who they will recruit when they submit a proposal, Rogers said.
At WSU, for example, Rogers said, volunteers are used in studying new mobile apps, in testing various teaching and learning techniques and to help audiology students learn how to conduct hearing tests.
Studies involve people of all ages and various demographics, he said. “It’s an incredible range. You name the population – from pregnant women to prisoners.”
People participate in research for various reasons, according to researchers and participants, from learning something about themselves to helping contribute to that “new knowledge” Rogers refers to. Occasionally, participants receive nominal stipends for participating.
For Janel Unrein, it’s rewarding to think her son has a part in setting the standards for how other intellectually-challenged kids can be tested in balance and coordination.
Wide range of topics
Pitetti, who lost a leg to a landmine during the Vietnam War, has used volunteers for many of his studies on physical fitness and the disabled.
For the past several years, he has partnered with the Arc of Sedgwick County to determine the best ways to modify current school physical fitness tests for use on kids with intellectual challenges.
“Other research has said their intellectual disabilities prevent us from doing these tests,” Pitetti said. “That’s malarkey. Their IQ doesn’t prevent them demonstrating their physical abilities.”
With his latest research, Pitetti hopes physical fitness professionals can find ways to develop customized exercises for children with intellectual disabilities.
“They can be healthy kids who simply have a lower-than-average IQ,” he said.
At the KU School of Medicine-Wichita, Tracie Collins and Matthew Macaluso rely on human subjects for their research, too.
Collins, a physician and chairwoman of the school’s department of preventive medicine and public health, is trying to figure out the best way to promote walking among blacks who have peripheral artery disease, a common condition that affects blood circulation to the legs. Walking can be a good way to get exercise, but if one has bad leg circulation, it can be painful, she said.
Because her federally-funded study involves a specific demographic with a specific disease, finding participants is a challenge. She has recruited volunteers at community centers, churches, through ads and direct mail for her study on increasing awareness of the disease and helping people understand that exercise will help lower the risk for other diseases.
Macaluso, assistant professor of psychiatry, is studying whether a lab test using urine samples can help diagnose bipolar disorder. Right now, health care professionals rely on interviews with a patient and family members to diagnose the condition, he said.
At Wichita State’s Software Usability Research Lab, director Barbara Chaparro, an associate professor in the psychology department, has been studying the way people interact with technology.
“We work with a lot of companies to evaluate websites and apps,” she said. “We bring in particular users of those sites or apps, usually their target audience.”
Not only do the companies get information, but the WSU doctoral students get information about human-computer interaction using real-world projects.
For one current project, the lab is helping to evaluate how well physicians and nurses at Children’s Mercy Hospital in Kansas City, Mo., are able to use iPads when working with electronic medical records. Most health care professionals have gotten used to using laptops for electronic medical records, but iPads can be more challenging, with their smaller touch screens, Chaparro said.