ALS Association supports work to bring rural patients into clinical trials

$400,000 award went to 5 institutes aiming to overcome research barriers

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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The ALS Association awarded $400,000 to University of Missouri-Columbia School of Medicine and its NextGen Precision Health Initiative as part of its program to encourage more amyotrophic lateral sclerosis (ALS) patients living in rural areas to take part in clinical trials.

The university’s 2023 Trial Capacity Award was given to W. David Arnold, MD, the executive director of NextGen and a professor of physical medicine and rehabilitation at the medical school. It is expected to support efforts to break down the various barriers keeping rural Missourians from participating in ALS trials, including those of potential treatments.

Specifically, the funds will help create a new position in NextGen devoted to identifying and circumventing obstacles facing ALS patients in rural communities, like difficulties in accessing distant clinics. This person will serve as the point of contact for people interested in participating in clinical trials, in addition to boosting research collaborations.

It was one of five such awards, totaling nearly $2 million, given to scientists working at institutes in Texas, Wisconsin, New York, and California, as well as in Missouri.

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Distant clinical trial sites can be a barrier for rural ALS patients

“I hope this person to be a valuable resource for ALS research at the University of Missouri and to be the champion for improving clinical research access for rural Missourians,” Arnold said in a university press release.

A study into ALS prevalence by U.S. region for 2015 found the highest rate — about 5.5 for every 100,000 residents — to be in the Midwest, a region that includes Missouri.

Muscle weakness is a classic symptom of ALS, a progressive neurodegenerative disease, and patients can find travel to distant clinical trial sites difficult at best. Rural areas generally lack the population and services needed to support large clinical centers.

The Missouri university system’s NextGen Precision Health Initiative promotes research across its four public campuses, and has among its goals to “revolutionize health care for our citizens, [and] eliminate health care disparities,” it states on its website.

In addition to addressing the bottlenecks affecting trial participation by rural residents, the award aims to encourage greater outreach to U.S. veterans and to residents for whom English is not the primary language.

Making trials more accessible to a “wider community of people with ALS’

“ALS clinical research sites often know what they need to do to reduce or eliminate barriers to trial participation, but they don’t have the resources or the infrastructure to do it,” said Paul Larkin, director of the association’s research program.

“Through our Trial Capacity Awards, we provide the support these sites need to reduce or eliminate specific obstacles or bottlenecks, improving trial accessibility to a wider community of people living with ALS as well as increasing the efficiency and pace at which this research is conducted,” he added.

According to Arnold, the University of Missouri-Columbia is leading multiple research studies involving ALS patients. The association award will help to foster new research collaborations and connections, as well as finding ways to bring into studies more patients in outlying areas.

“We’re trying to push the envelope. A lot of patients really want to be involved in research,” Arnold said. “We want to try to make that as accessible as possible for all of our patients.”