Breaking Down Barriers: Trial Capacity Awardees Work to Improve Access to ALS Clinical Trials

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While the number of ALS clinical trials has greatly expanded over the last five years, the number of people living with ALS participating in this research remains low and highly variable across trial sites. In fact, it is estimated that only 10% of people living with ALS participate in clinical trials in North America.

There are a number of different reasons for this, including strict eligibility criteria, but many people living with ALS are also unaware of clinical trial opportunities, have misperceptions about research, or are unable to access trials because of distance, finances or other obstacles.

“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,” says Dr. Paul Larkin, who directs the ALS 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.”

Clinical trials are essential for evaluating effectiveness of the therapeutic targets identified in basic science. Only by increasing the number of high-quality trials and the numbers of people participating in them can we accelerate the authorization of life-changing treatments.”
Liberty Jenkins, M.D.

This year, the Association has committed nearly $2 million to support clinical trial capacity-building efforts at five established and emerging ALS trial sites, bringing the total amount awarded through this 2-year-old program to almost $7 million.

Those receiving a 2023 Trial Capacity Award are:

Dave Arnold, M.D., at the University of Missouri-Columbia, who is focused on breaking down the barriers that keep rural Missourians from participating in ALS clinical trials.

Sarah Berth, M.D., Ph.D., at Baylor College of Medicine, who is committed to developing a new clinical trials program for people living with ALS in the Houston, Texas area.

Dominic Fee, M.D., at The Medical College of Wisconsin, who aims to expand outreach to help engage and enroll Wisconsinites living with ALS who do not speak English as their first language or live in rural areas.

Noam Harel, M.D., Ph.D., from the Bronx Veterans Medical Research Foundation, who plans to provide veterans living with ALS with more opportunities to participate in clinical trials by instilling a thriving research culture into the James J. Peters Veterans ALS Clinic.

Liberty Jenkins, M.D., from California Pacific Medical Center and Forbes Norris MDA/ALS Research Center, who intends to create a research navigator role to help break down logistical, financial and geographic barriers to ALS trial participation. 

By eliminating barriers to trial participation, especially those impacting currently underserved populations, these projects will help increase the number and diversity of people living with ALS who have the opportunity to participate in clinical research.

For example, Dr. Harel emphasized the impact his grant would have on veterans. “Although we have an ALS Association Certified ALS Treatment Center of Excellence, our clinic has not traditionally participated to a large degree in ALS-oriented research,” Dr. Harel says. “As such, our veterans with ALS are missing out on opportunities to participate in clinical trials. This is an especially important challenge to address because veterans are at higher risk of acquiring ALS than non-veterans. We look forward to teaming with the ALS Association to enhance our clinic’s trial capacity and advance the fight against ALS.”

For more information about ALS clinical trials, visit our website HERE

To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog HERE.

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Comments

Submitted by: Sandy B. on Wed, 12/13/2023

My genetic test came back , saying I am a carrier of FIG 4 and positive on the C9 with 44 repeats . I went into Research right away !! I go to NIH in Bethesda Maryland . I am now going once a year . I am symtom free as of now ! We have lost 6 family members , so far !! Scared to death, but very lucky to be alive !!

Submitted by: Stephanie O. on Thu, 12/14/2023

Sandy, our condolences for everything you've been through.

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