Community Efforts to Standardize and Improve ALS Diagnosis: Kuldip Dave, PhD

WATCH TIME: 4 minutes

"The 'Think ALS' tool provides an easy-to-use guide for recognizing ALS features and ensures referrals are marked urgent, helping reduce diagnosis wait times from months to just a few weeks."

A recently published study by researchers at The ALS Association found that it can take twice as long for people to receive an amyotrophic lateral sclerosis (ALS) diagnosis if they are seen in a general neurology clinic compared with a specialist clinic. The data, published in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia, featured 78,520 Medicare beneficiaries who were diagnosed with ALS between 2011 and 2021. In addition to delayed wait times, the study found that on average, a patient with ALS undergoes a median of 1.5 (max, 4.0) brain MRIs, 1.6 (max, 6.0) spine-MRIs, and 1.3 (max, 4.0) electromyography studies in the 12 months preceding their diagnosis.

The study built on common knowledge that non-ALS/general neurologists form a key link in ALS diagnostic delays in the U.S. A notable finding from the study was that the bulk of diagnostic delay in the U.S. may be while under the care of neurologists, particularly non-neuromuscular trained neurologists. Investigators also concluded that in the very early stages of ALS, when only one limb or spinal segment is affected, non-ALS clinicians may order serial imaging tests trying to find an alternate focal localizable lesion or may not think about ordering comprehensive three-segment EMGs such as required for ALS workup such as noted in test ordering patterns in the study.

To better understand the implications of the research, as well as some of the gaps in ALS diagnosis, NeurologyLive® sat down with first author Kuldip Dave, PhD, senior vice president of research at The ALS Association. Dave, who’s been with the organization since 2019, provided commentary on the complexities with ALS diagnosis, and the small nuances to each institution’s approach. He also spoke about the ongoing efforts from The ALS Association to fund research into diagnostic biomarkers and promote clinician education. Furthermore, he spoke on the “Think ALS” diagnostic tool, which is designed to streamline referrals and improve recognition of ALS symptoms among non-specialists.

REFERENCE
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. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. Published online December 10, 2024. doi:10.1080/21678421.2024.2432034