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Researchers at the Shirley Ryan AbilityLab have received a $2.5 million five-year grant to continue their groundbreaking work in advancing the treatment and rehabilitation of people with spinal cord injuries. The grant, announced in September, is one of 14 around the country awarded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), which is part of the U.S. Department of Health and Human Services. “I’m overjoyed,” said Allen Heinemann, PhD, Director of the Center for Rehabilitation Outcomes Research (CROR), at the Shirley Ryan AbilityLab. “This is a premier funding mechanism in rehabilitation and disability research. We have an incredible track record, and our leadership really cares about our participation in this national network.”
Almost 300,000 individuals in the U.S. are living with a spinal cord injury and about 18,000 people acquire a new SCI each year. Over the last 15 years, acts of violence, including gunshot wounds, have made up a greater percentage of the cause of injury, although car crashes remain the main cause.
The Spinal Cord Injury Model Systems (SCIMS) grants are awarded every five years. They require an institution to enroll at least 30 people annually with spinal cord injuries in a longitudinal database that tracks their progress and quality of life. The enrollees must agree to answer a set of questions at one-, five- and subsequent five-year intervals. The information from study participants provides valuable information to researchers, academicians and clinicians about the lives of people with spinal cord injury and trends affecting their life experiences. “It’s been a source for much of the research and many publications that inform the care of people with spinal cord injuries,” notes David Chen, MD, Section Chief of Spinal Cord Injury at the Shirley Ryan AbilityLab and co-principal investigator on the grant with Heinemann. “We now have a better understanding of the secondary conditions and complications that individuals experience as they’re living longer with SCI. That has translated to improved care and prevention of those complications.”
This is a premier funding mechanism in rehabilitation and disability research.
Allen Heinemann, PhD
Body
The Shirley Ryan AbilityLab and CROR have received SCIMS grants almost continually since NIDILRR started making them in 1970. “We have some patients who are almost at the 50-year follow-up mark,” says Heinemann. But getting renewed by NIDILRR is not a sure thing. Five of the 14 centers that received SCIMS grants in 2016 were not chosen in 2021. Three new centers were added and two that had previously received grants were brought back. The grant reviewers include faculty at medical schools and people at other medical centers around the country who are not applying for a grant and don’t have a conflict of interest.
In addition to funding the ongoing work of tracking SCI patients at the Shirley Ryan AbilityLab, the grant covers the cost of a new on-site project. CROR will be working with two research scientists at the Shirley Ryan AbilityLab to develop a customized smartphone app to help people with spinal cord injuries better adhere to exercise guidelines. “The app will augment clinical practice guidelines based on expert advice about the intensity and frequency of exercise for people with SCI,” says Heinemann. “We want to help people select and schedule exercise and then hold themselves accountable. Also, reward them for achieving goals and encourage them when they fall a little short.”
Even though many SCI patients have lower-limb paralysis, they still need to challenge their cardiac function to maintain their health. That’s more difficult because many cardio exercise machines focus on the lower body, either walking, stepping or cycling. The app will incorporate exercise guidelines developed by Kathleen Martin Ginis, PhD, spinal cord injury researcher and Director of SCI Action Canada. Ginis' research has found that 50% of people with SCI do not participate in any leisure-time physical activity. To significantly improve their fitness levels, people with SCI should engage in several sessions of moderate to heavy aerobic exercise a week along with two strength training workouts. “It should be something that gets you sweating,” says Alex Wong, PhD, one of the CROR research scientists developing the smartphone app. “Everyone knows exercise is important, but few people are able to meet the recommended amount. It’s even more difficult for people with disabilities.” Arun Jayaraman, PhD, Executive Director of the Technology and Innovation Hub at the Shirley Ryan AbilityLab, will be working with Wong on the project.
Everyone knows exercise is important, but few people are able to meet the recommended amount.
Arun Jayaraman, PhD
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The customized app will be tested in a usability trial in year two of the project. In the later stages of the five-year study, it will be compared with commercially available exercise apps to see if it increases the amount and duration of physical activities engaged in by people with SCI.
The SCIMS grant also requires each institution to propose a collaborative research “module” that could involve at least two other grant recipients. If a project doesn’t get at least two other institutions to sign on, it won’t move forward. The modules are not intended to be time- or labor-intensive for the participating institutions and may involve as little as asking a few additional questions on a follow-up survey. In the last round of funding, the Shirley Ryan AbilityLab researchers participated in five modules proposed by other institutions. One involved adding a few extra questions to a survey about spasticity that Shirley Ryan AbilityLab was already doing. The resulting information proved very useful, Heinemann said, and resulted in three publications.
The module proposed by Shirley Ryan AbilityLab will look for biomarkers of spasticity as predictors of recovery after spinal cord injury. The work will be led by Monica Perez, PhD, a professor at Northwestern University’s Feinberg School of Medicine and Scientific Chair, Arms + Hands Lab, at the Shirley Ryan AbilityLab. Her hypothesis is that spasticity, rigidity of limbs, is an indicator of neurological recovery, because it shows that signals are still getting through to muscles. Participating institutions already do a thorough neurological exam of their SCI patients, but the project would entail doing a second exam and two blood draws to look for biomarkers, which are genetic material in the blood. More biomarkers might be a “good thing,” Heinemann says. “If you saw a high level of biomarkers, the odds of neurological recovery could be greater. We’d like to investigate that.”