Improving Timely ALS Diagnosis With the thinkALS Toolkit: Melody Schaeffer, PhD, MPH

WATCH TIME: 5 minutes

“The reason that we are at AAN is to get in front of as many general neurologists or non-neuromuscular specialists as possible. Our neuromuscular specialist physicians—they’re thinking ALS already. Of course, we love to talk to them. We love to see them. But the goal of the thinkALS Toolkit is to promote thinking ALS to folks who might not always be thinking that for their patient population.”

Over the past two decades, the average time to diagnose amyotrophic lateral sclerosis (ALS) in the United States has remained unchanged at approximately 12 months, despite advancements in clinical practice.¹ Many patients see 3 to 4 clinicians before reaching an ALS specialist for diagnosis confirmation and treatment initiation. To better understand where delays occur, a recently published paper analyzed Medicare claims data and surveyed ALS Certified Treatment Centers of Excellence to evaluate patterns of healthcare utilization and wait times during the diagnostic journey. From 2011 to 2021, over 78,000 Medicare beneficiaries were diagnosed with ALS.

Published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, the average time from a patient’s first neurologist visit to confirmed diagnosis was 16.5 months, with significantly longer delays when seen by nonneuromuscular neurologists compared with ALS specialists.¹ Patients frequently underwent multiple MRIs and EMG studies in the year leading up to diagnosis. Despite more than 75% of ALS centers offering new consultations in 4 weeks, delays persisted. To address this gap, the study introduced thinkALS, a clinical tool designed to support nonALS neurologists in recognizing early signs and making timely referrals.

At the 2025 American Academy of Neurology (AAN) Annual Meeting, held April 5-9, in San Diego, California, Melody Schaeffer, PhD, MPH, senior director of mission programs at The ALS Association, sat down with NeurologyLive^® to highlight the significant delay patients with ALS face in receiving a diagnosis and how this impacts access to therapies, trials, and support services. She talked about how The ALS Association developed the thinkALS toolkit that can help general neurologists recognize symptoms, apply inclusion/exclusion criteria, and escalate care when ALS may be suspected. Schaeffer noted that the toolkit not only aims to assist with diagnosis but also could serve as a referral guide to ensure timely specialist involvement.

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REFERENCES
1. Dave KD, Oskarsson B, Yersak J, et al. Contributions of neurologists to diagnostic timelines of ALS and thinkALS as an early referral instrument for clinicians. Amyotroph Lateral Scler Frontotemporal Degener. Published online December 10, 2024. doi:10.1080/21678421.2024.2432034

For more information on the thinkALS toolkit, visit www.als.org/thinkals. To get the available toolkit, click here.