{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T23:16:10Z","timestamp":1787008570997,"version":"build-2736575974"},"reference-count":54,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2025,8,11]],"date-time":"2025-08-11T00:00:00Z","timestamp":1754870400000},"content-version":"vor","delay-in-days":222,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100005614","name":"Biogen","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100005614","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,7,3]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Amyotrophic lateral sclerosis is a rare neurodegenerative disease that requires multidisciplinary care, resulting in extensive healthcare resource utilization. No study has explored the prevalence of amyotrophic lateral sclerosis or characterized associated healthcare resource utilization in France, despite its high burden on people living with amyotrophic lateral sclerosis, caregivers and the healthcare system. Herein, we conducted a France-wide retrospective study to describe the epidemiology, disease course and economic burden of amyotrophic lateral sclerosis. People living with amyotrophic lateral sclerosis were identified from the French population from 2012 to 2019 using the French national health data system. A milestone and symptom-based staging algorithm was developed to categorize the incident cohort into early, mid and late stages. Data were extracted on epidemiology, demographic and clinical characteristics and clinical treatments. Healthcare resource utilization and costs were analysed for amyotrophic lateral sclerosis cases and matched non-amyotrophic lateral sclerosis controls and at disease stages. Events of interests were identified, and a competing risk analysis was conducted. Comparative statistics were performed using paired t-test, ANOVA and \u03c72 test. We identified 18 289 incident amyotrophic lateral sclerosis cases, 56.1% of whom were male. The average age at diagnosis was 68.4 (\u00b1 12.5) years. In 2019, the estimated incidence and prevalence were 3.5\/100 000 person-years and 11.0\/100 000 persons, respectively. All-cause hospitalizations were higher among people at mid stage (1.66 person-years) and late stage (2.82 person-years) than among people at early stage (1.46 person-years) and for the amyotrophic lateral sclerosis cases (1.98 person-years) than for the matched non-amyotrophic lateral sclerosis controls (0.45 person-years). Home hospitalization and rehabilitation admission were more prevalent among people in later stages. The rate of out-patient and ambulatory consultations to all specialties was 13.8 person-years for people at early and mid stages and 11.1 person-years for people at late stage and 13.0 and 8.7 person-years for the amyotrophic lateral sclerosis cases and the matched non-amyotrophic lateral sclerosis controls, respectively. Direct costs increased as the disease progressed and were also higher for the amyotrophic lateral sclerosis cases than for the matched non-amyotrophic lateral sclerosis controls. Amyotrophic lateral sclerosis imposes a significant health burden through incremental healthcare resource utilization across all stages that increases with disease progression. Out-patient and ambulatory resource consumption decreased as the disease progressed to a more severe form, accompanied by a corresponding increase in in-patient services. These findings shed light on the complex needs of people living with amyotrophic lateral sclerosis and the continued need for more efficacious treatments.<\/jats:p>","DOI":"10.1093\/braincomms\/fcaf292","type":"journal-article","created":{"date-parts":[[2025,8,6]],"date-time":"2025-08-06T11:43:07Z","timestamp":1754480587000},"source":"Crossref","is-referenced-by-count":5,"title":["Epidemiology, disease evolution and economic burden of amyotrophic lateral sclerosis in France using the French national health data system"],"prefix":"10.1093","volume":"7","author":[{"given":"Philippe","family":"Corcia","sequence":"first","affiliation":[{"name":"CRMR SLA, CHU de Tours , 37044 Tours ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie","family":"Stenson","sequence":"additional","affiliation":[{"name":"Global Value and Access, Biogen , Cambridge 02142 ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agathe","family":"Doutriaux","sequence":"additional","affiliation":[{"name":"Formerly of France Value and Access, Biogen , 92913 Paris La D\u00e9fense ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hicham","family":"Hadjrabia","sequence":"additional","affiliation":[{"name":"France Value and Access, Biogen , 92913 Paris La D\u00e9fense ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fran\u00e7ois","family":"Boer","sequence":"additional","affiliation":[{"name":"Formerly of France Medical Affairs Rare Diseases, Biogen , 92913 Paris La D\u00e9fense ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Seham","family":"Issa","sequence":"additional","affiliation":[{"name":"RWE Data and Analytics, Oracle Life Sciences , 75013 Paris ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Marguet","sequence":"additional","affiliation":[{"name":"RWE Data and Analytics, Oracle Life Sciences , 75013 Paris ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frederic","family":"Bernard","sequence":"additional","affiliation":[{"name":"RWE Data and Analytics, Oracle Life Sciences , 75013 Paris ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Enkhgerel","family":"Nasanbat","sequence":"additional","affiliation":[{"name":"RWE Data and Analytics, Oracle Life Sciences , 75013 Paris ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gregoire","family":"Nowacki","sequence":"additional","affiliation":[{"name":"RWE Data and Analytics, Oracle Life Sciences , 75013 Paris ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"G\u00e9rard","family":"de Pouvourville","sequence":"additional","affiliation":[{"name":"Department of Economics, ESSEC Business School , 95021 Cergy Pontoise ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philippe","family":"Couratier","sequence":"additional","affiliation":[{"name":"CRMR SLA, CHU de Limoges , 87000 Limoges ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,8,11]]},"reference":[{"issue":"10360","key":"2025082104120771400_fcaf292-B1","doi-asserted-by":"crossref","first-page":"1363","DOI":"10.1016\/S0140-6736(22)01272-7","article-title":"Amyotrophic lateral sclerosis","volume":"400","author":"Feldman","year":"2022","journal-title":"Lancet"},{"issue":"2","key":"2025082104120771400_fcaf292-B2","doi-asserted-by":"crossref","first-page":"104","DOI":"10.1038\/s41582-020-00434-z","article-title":"Improving clinical trial outcomes in amyotrophic lateral sclerosis","volume":"17","author":"Kiernan","year":"2021","journal-title":"Nat Rev Neurol"},{"issue":"5\u20136","key":"2025082104120771400_fcaf292-B3","doi-asserted-by":"crossref","first-page":"426","DOI":"10.1080\/21678421.2017.1306566","article-title":"Nationwide incidence of motor neuron disease using the French health insurance information system database","volume":"18","author":"Kab","year":"2017","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"5","key":"2025082104120771400_fcaf292-B4","doi-asserted-by":"crossref","first-page":"771","DOI":"10.1097\/WCO.0000000000000730","article-title":"Epidemiology of amyotrophic lateral sclerosis: An update of recent literature","volume":"32","author":"Longinetti","year":"2019","journal-title":"Curr Opin Neurol"},{"issue":"10","key":"2025082104120771400_fcaf292-B5","doi-asserted-by":"crossref","first-page":"1918","DOI":"10.1111\/ene.14393","article-title":"Amyotrophic lateral sclerosis: A clinical 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2025."},{"key":"2025082104120771400_fcaf292-B51","doi-asserted-by":"crossref","first-page":"S283","DOI":"10.1016\/j.jval.2020.04.1013","article-title":"PND125 REAL-WORLD HEALTHCARE UTILIZATION, COSTS, AND PROGRESSION MILESTONE PATTERNS AMONG FFS MEDICARE PATIENTS NEWLY DIAGNOSED WITH AMYOTROPHIC LATERAL SCLEROSIS (ALS)","volume":"23","author":"Millard","year":"2020","journal-title":"Value Health."},{"issue":"1\u20132","key":"2025082104120771400_fcaf292-B52","doi-asserted-by":"crossref","first-page":"24","DOI":"10.1080\/21678421.2016.1241280","article-title":"Validity of medico-administrative data related to amyotrophic lateral sclerosis in France: A population-based study","volume":"18","author":"Vasta","year":"2017","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"1\u20132","key":"2025082104120771400_fcaf292-B53","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1159\/000479969","article-title":"Characteristics and prognosis of oldest old subjects 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