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Abstract Details

Demographic and Survival Analysis of Midwestern Patients with Amyotrophic Lateral Sclerosis via the ALS Association Mid-America Chapter
Neuromuscular and Clinical Neurophysiology (EMG)
Neuromuscular and Clinical Neurophysiology (EMG) Posters (7:00 AM-5:00 PM)
041
To explore the demographic data and survival in patients with Amyotrophic lateral sclerosis (ALS) in Midwest registered to the ALS Association Mid-America Chapter. 
ALS is a fatal neurodegenerative disorder that involves upper and lower motor neurons. Several epidemiological studies have been conducted in the United States, however, there are no territorial research representing patients with ALS in Midwest.
Retrospective study with the database from the ALS Association Mid-America Chapter which included deceased patients from January 1, 2010, to September 1, 2020. Demographic data including states of residence, gender, race, veteran status, region of onset, diagnosis type (sporadic vs familial), number of clinic visits, use of feeding tube and non-invasive ventilation (NIV) were analyzed to depict the characteristics of the Midwestern patient population. For the survival analysis, time to event was defined as the time from symptom onset to death in those who had the date of symptom onset available. Survival analysis was performed with survival curve and log-rank test.
The database involved 1447 patients. Demographic data were comparable to previous reports with male preponderance in limb onset disease as opposed to female predominance in bulbar onset disease. Veterans (N=298) had older age at onset than non-veterans (mean±standard deviation: 69.0 ± 10.5 vs 63.9 ± 11.5, p<0.001), but no difference in survival. 897 patients (62%) who had the date of symptom onset available were included in the survival analysis. Limb onset disease was associated with longer survival than bulbar onset disease (median survival (months) [95% confidence interval]: 31.0 [28.5, 33.5] vs 24.0 [21.9, 26.1], p<0.001).
This is the first demographic and survival analysis representing the Midwestern population with ALS. The survival analysis reproduced similar findings from previous studies in other population.
Authors/Disclosures
Mai Yamakawa, MD (University of California Los Angeles)
PRESENTER 		Dr. Yamakawa has nothing to disclose.
No disclosure on file
Jeffrey Statland, MD (University of Kansas Medical Center) Dr. Statland has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Arrowhead. Dr. Statland has received personal compensation in the range of $500-$4,999 for serving as a Consultant for ML Bio. Dr. Statland has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Epic Bio. Dr. Statland has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Armatus . Dr. Statland has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kate Therapeutics. Dr. Statland has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Vita Therapeutics. Dr. Statland has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Dyne Therapeutics. Dr. Statland has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Avidity . Dr. Statland has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Fulcrum Therapeutics. Dr. Statland has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Dr. Statland has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Vertex . The institution of Dr. Statland has received research support from NIH. The institution of Dr. Statland has received research support from FSHD Society. The institution of Dr. Statland has received research support from Friends of FSH Research. The institution of Dr. Statland has received research support from FSHD Canada. The institution of Dr. Statland has received research support from MDA.