Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): A national, cross-sectional study

Affiliates Christine Zizzi [1][2], Jamison Seabury [1], Spencer Rosero [1], Danae Alexandrou [1], Ellen Wagner [1], Jennifer S Weinstein [1], Anika Varma [1], Nuran Dilek [2], John Heatwole [3], Joanne Wuu [4], James Caress [5], Richard Bedlack [6], Volkan Granit [4], Jeffrey M Statland [7], Paul Mehta [8], Michael Benatar [4], Chad Heatwole [1][2]


[1] Center for Health & Technology, Rochester, NY, USA
[2] University of Rochester, Department of Neurology, Rochester, NY, USA
[3] Sutherland High School, Pittsford, NY, USA
[4] University of Miami Miller School of Medicine, Department of Neurology, Miami, FL, USA
[5] Wake Forest Baptist Health, Medical Center Blvd, Winston-Salem, NC, USA
[6] Duke University School of Medicine, Department of Neurology, Durham, NC, USA
[7] University of Kansas Medical Center, Department of Neurology, Kansas City, KS, USA
[8] Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry, National ALS Registry, Atlanta, GA, USA

Journal EClinicalMedicine – The Lancet Discovery Science
Summary This paper describes PRISM-ALS (Patient reported impact of symptoms in ALS) study undertaken by researchers in order to better understand the onset of symptoms within persons with ALS. The study initially conducted 15 qualitative interviews of individuals with ALS to analyze 732 quotes regarding symptomatic disease burden. Subsequently, the researchers conducted a cross-sectional study of 497 participants with ALS through the National ALS Registry. Findings regarding the prevalence of ALS symptoms and disease burden impact can be used to better tailor therapeutic interventions in the future.
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