Groundbreaking thinkALS^™ Tool Empowers Providers to Identify and Refer Patients Quicker 

December 10, 2024 (Arlington, VA) – It can take twice as long for people to receive an ALS diagnosis if they are seen in a general neurology clinic compared to a specialist clinic, according to new research published today in the peer-reviewed journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. However, an easy-to-use clinical diagnostic and referral guide for non-ALS specialists, known as thinkALS^™, can help reduce this diagnostic delay.

The research, led by the ALS Association in collaboration with several leading ALS clinicians, examined Medicare claims made from 2011 to 2021 and found that the average time for ALS/neuromuscular specialists to diagnose ALS from initial consult is 9.6 months (median 4.5 months), while it is 16.7 months for non-specialist neurologists (median 9 months).

Such delays in diagnosis are significant because, on average, people with ALS only live for 2–5 years after their symptoms begin.

“This study shows that the bulk of ALS diagnostic delay may be occurring while under the care of non-neuromuscular trained neurologists who may not recognize ALS features early or not know how to refer to ALS clinics directly,” said senior author and project lead investigator, Suma Babu, M.B.B.S., M.P.H., assistant professor of neurology at Harvard Medical School and co-director of the Neurological Clinical Research Institute at Massachusetts General Hospital.

In the time leading up to an ALS diagnosis, people are often subject to redundant and painful diagnostic testing and misdiagnoses that result in unnecessary treatments, such as spine surgeries, carpal tunnel releases, and immunotherapies. Based on the Medicare claims they analyzed, Babu and colleagues found that billing for spine/neurosurgical evaluation and management services more than doubled from 0.6% before ALS symptoms appeared to 1.6% in the 12 months prior to an ALS diagnosis.

Diagnostic delays also prevent people with ALS from accessing multidisciplinary care​, which has been shown to increase survival and improve quality of life, as well as postpone the start of disease-modifying medications and life-sustaining treatments, enrollment in clinical trials​, and pursuing disability benefits​. 

“Diagnosing ALS is complex because there is no definitive diagnostic test and symptoms may mimic other neurological conditions, especially in the earlier stages,” Babu explained.

thinkALS (als.org/thinkals) was developed by a working group of practicing neurologists, leaders of neurology professional societies, and ALS clinician experts that was convened by the ALS Association following a 2020 multistakeholder ALS Roundtable focused on reducing time to diagnosis. In addition to providing lists of clinical features that support—or don’t support—an ALS diagnosis, the tool also provides clear guidance on how to refer patients to specialty clinics so they are seen and evaluated quickly.

“Getting people to a diagnosis sooner is a critical first step in making ALS a livable disease. The longer it takes to be diagnosed, the longer they are waiting to access care, treatments, and therapies that may help them live and retain their independence longer,” said Kuldip Dave, Ph.D., the Association’s senior vice president for research and co-first author on the publication.