ALS Aims to Speed Accurate Diagnosis

The ALS Association raises money for innovative research into new treatments and potential cures for amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects the brain and spinal cord. Typically diagnosed between age 40 and 70, ALS often begins with symptoms affecting any number of muscles in the body. The progressive disease may be diagnosed when a person has trouble lifting a coffee cup or holding a phone or when the muscles that control speech cause a change in vocal pitch.

ALS affects motor neurons that extend from the brain to the spinal cord and muscles throughout the body. These neurons are responsible for muscle control and voluntary movements. When ALS leads to the gradual degeneration of these motor neurons, the brain loses the ability to control muscles. Eventually, ALS patients become unable to move, speak, eat, and breathe.

Every 90 minutes, an individual receives an ALS diagnosis. In 2021, the ALS Association created a new diagnostic guide to facilitate earlier, more accurate diagnoses of ALS. Designed as a tool for neurologists, thinkALS aims to reduce the time between the onset of symptoms and diagnosis.

The earlier a patient receives an ALS diagnosis, the better chance they have to participate in clinical trials and access a broader range of treatments. Additionally, early diagnosis prevents unnecessary testing and reduces the burden on the healthcare system.

Neurologists sometimes face difficulties diagnosing ALS because no single test or procedure exists. Instead, they must rely on a lengthy diagnostic process of eliminating other diseases that share symptoms with ALS, which can take more than a year on average. Many patients lose significant function during this time due to a lack of multidisciplinary care and treatments.

ThinkALS includes a comprehensive list of ALS’s key clinical features, helping neurologists narrow their diagnostic search much faster. They can also search by the patient’s zip code to access information about multidisciplinary clinics in the area. ThinkALS aims to secure consultations at ALS clinics within two weeks of a physician’s referral. This short time frame requires physicians to use precise, correct referral language, which the thinkALS tool provides. Properly written referrals can accelerate access to ALS treatment options and substantially improve treatment outcomes.

The thinkALS development team includes researchers and physicians at the forefront of clinical therapeutic development for ALS. The need for such a tool arose out of the ALS Association’s “Reducing Time to Diagnosis” roundtable, comprising clinicians, scientists, individuals with ALS, caregivers, and pharmaceutical representatives. Participants shared insights about barriers to diagnosis, including lack of general physician education of the disease.

The ThinkALS tool aims to increase clinician awareness of disease symptoms, preparing them to make quick referrals to specialists and multidisciplinary facilities. At an ALS-certified clinic or center, patients receive care from a team that might include a neurologist, physical and occupational therapist, nurse, speech-language pathologist, and dietician. The care team may also include a social worker or mental healthcare professional that can help patients navigate the emotional toll of an ALS diagnosis.

When patients receive diagnoses early, they can access therapies that can help them live longer and stay functionally independent as long as possible. ThinkALS is primarily designed for non-ALS specialists.