title: Feedback interaction of research, advocacy, and clinical care applied to ALS research in South America.
abstract: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease causing motor neuron loss and weakness. Worldwide prevalence is 4-6/100,000. Incidence is 1.5-2.7/100,000 per year and may be increasing. Studies suggest race and ethnicity affect the prevalence and incidence of ALS.(1) Understanding the impact of these variables on disease incidence could provide important insight into ALS determinants. A major roadblock for comparison across populations is the lack of epidemiologic data about ALS from many underdeveloped regions. In these regions, ALS is often undertreated due to health care disparities. This article discusses challenges for ALS research in South America (SA) and examines the ALS scientific record to explore the interactions and synergies of research, clinical care, and patient advocacy in underdeveloped regions.
authors.affiliation: From the University of Massachusetts Medical School (M.E.B., J.S.), Worcester; San Francisco University of Quito (A.C., D.C., C.F., R.L.), Ecuador; Wellesley College (E.D.), MA; and Massachusetts General Hospital (N.A., J.D.B.), Harvard Medical School, Boston.
authors.forename: Miriam E
authors.initials: ME
authors.lastname: Bucheli
authors.forename: Amelia
authors.initials: A
authors.lastname: Calderón
authors.forename: Diana
authors.initials: D
authors.lastname: Chicaiza
authors.forename: Carolina
authors.initials: C
authors.lastname: Franco
authors.forename: Ricardo
authors.initials: R
authors.lastname: López
authors.forename: Elise
authors.initials: E
authors.lastname: Digga
authors.forename: Nazem
authors.initials: N
authors.lastname: Atassi
authors.forename: Johnny
authors.initials: J
authors.lastname: Salameh
authors.forename: James D
authors.initials: JD
authors.lastname: Berry
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology* / Q000628:therapy*; D035843:Biomedical Research / Q000379:methods* / Q000706:statistics & numerical data / Q000639:trends; D019468:Disease Management; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D010344:Patient Advocacy; D015995:Prevalence; D013020:South America / Q000453:epidemiology