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 |
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. |
Link to paper | Read the paper here! |