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Abstract Details

Referral Patterns for Patients With Amyotrophic Lateral Sclerosis Enrolled in a US-Based Administrative Claims Database
General Neurology
P8 - Poster Session 8 (8:00 AM-9:00 AM)
2-009
To describe data on demographics, clinical characteristics, pre-index disease progression milestones and healthcare resource utilization (HCRU), and referral patterns of patients with amyotrophic lateral sclerosis (ALS) enrolled in a real-world, US-based administrative claims database. 
ALS is a rare and progressive neurodegenerative disease that is difficult to diagnose. Diagnosis of ALS often involves referrals and time to diagnosis is influenced by the referring physician/specialty area. Diagnostic delays are common, yet timely diagnosis is critical for initiating effective treatment, emphasizing the need to understand referral patterns and their impact on ALS diagnosis. There are currently 3 US Food and Drug Administration-approved treatments for patients with ALS: riluzole, edaravone (Radicava® IV [intravenous] and Radicava ORS® oral suspension; Mitsubishi Tanabe Pharma America [MTPA]), and tofersen (for patients with a superoxide dismutase 1 mutation).
Patients with ALS continuously enrolled in Optum’s de-identified Clinformatics® Data Mart (CDM) from January 2007 to December 2023 were included and grouped based on ALS treatment pattern (ie, untreated, riluzole-only, MTPA edaravone±riluzole). Index date was the ALS diagnosis date.
Patients with ALS with a ≥2-year history prior to index ALS diagnosis (n=8120) enrolled in Optum’s CDM were a mean (SD) age of 68.5 (12.9) years, 54.8% male, and 65.5% were covered by Medicare (vs commercial insurance). Pre-index disease progression milestones and HCRU were measured. Overall, the top 3 specialty areas that diagnosed patients with ALS were psychiatry and neurology (37.6%), internal medicine (15.5%), and general acute care hospital (9.5%). Overall, the top 3 specialty areas that diagnosed patients referred to them were psychiatry and neurology (50.8%), internal medicine (17.8%), and family medicine (15.9%).
These real-world data may help clinicians and payers better understand the referral patterns of patients with ALS, which may aid in reducing delays in diagnosis and treatment. 
Authors/Disclosures
Malgorzata Ciepielewska
PRESENTER
Malgorzata Ciepielewska has received personal compensation for serving as an employee of Mitsubishi Tanable Pharma America, Inc..
John C. Novak, MD (OhioHealth Neurological Physicians) Dr. Novak has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for MT Pharma America. Dr. Novak has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for ALS Association. Dr. Novak has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Argenx. Dr. Novak has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for argenx. Dr. Novak has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for MT Pharma. The institution of Dr. Novak has received research support from ALS Association. Dr. Novak has received research support from MT Pharma.
Jeffrey Zhang (Princeton Pharmatech LLC.) The institution of Jeffrey Zhang has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for BioVie.
Ying Liu Ying Liu has nothing to disclose.
Polina Da Silva, Other (Mitsubishi Tanabe Pharma America) Mrs. Da Silva has nothing to disclose.