{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:17:48Z","timestamp":1787019468078,"version":"build-2736575974"},"reference-count":49,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2025,7,28]],"date-time":"2025-07-28T00:00:00Z","timestamp":1753660800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,7,28]],"date-time":"2025-07-28T00:00:00Z","timestamp":1753660800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Neuromuscular Diseases"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>\n                      The new treatment paradigm in Spinal Muscular Atrophy (SMA) has introduced novel phenotypes, changes in trajectories and clinical questions not fully addressed in clinical trials. To explore these challenges, several international initiatives have emerged.\n                      <jats:italic toggle=\"yes\">CuidAME<\/jats:italic>\n                      was created as a nationwide clinical network in Spain designed to standardise SMA care, facilitate knowledge sharing, and capture data in a longitudinal comprehensive registry.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>\n                      Evaluating the usefulness of the\n                      <jats:italic toggle=\"yes\">CuidAME<\/jats:italic>\n                      project to capture data in a real-world setting.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This multicentric cohort study includes individuals with SMA followed at participating hospitals. Clinical examinations and multidisciplinary assessments were performed during routine clinical visits. We present a cross-sectional analysis of the registry population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>As of February 2025, 543 participants from 25 hospitals were recruited: 12 were presymptomatic, 125 (23%) had SMA type 1, 208 (35%) type 2, 194 (38%) type 3, and 4 (&lt;1%) type 4. Among the cohort, 91% (n\u2009=\u2009495) had received at least one disease-modifier treatment, with 17 discontinuations. The registry included 5092 motor assessments, 1565 performed before treatment initiation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>\n                      <jats:italic toggle=\"yes\">CuidAME<\/jats:italic>\n                      is an academic, longitudinal, real-world data collection project that demonstrated a fast and effective model for implementation facilitating the standardization of clinical practices and outcome measures across Spain. By aligning with core dataset used in other registries and establishing multidisciplinary working groups, the initiative will contribute to sharing knowledge to advance SMA care and improve patient outcomes.\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/22143602251361190","type":"journal-article","created":{"date-parts":[[2025,7,29]],"date-time":"2025-07-29T06:48:28Z","timestamp":1753771708000},"page":"837-848","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["Real-world data on spinal muscular atrophy in Spain: Insights from over 500 individuals in the CuidAME project"],"prefix":"10.1177","volume":"12","author":[{"given":"Cristina","family":"Puig-Ram","sequence":"first","affiliation":[{"name":"Institut de Recerca Sant Joan de D\u00e9u"},{"name":"Facultat de Medicina i Ci\u00e8ncies de la Salut, Universitat de Barcelona (UB), Barcelona, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sonia","family":"Segovia","sequence":"additional","affiliation":[{"name":"John Walton Muscular Dystrophy Research Centre, Newcastle University Faculty of Medical Sciences, and Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"},{"name":"Neuromuscular Disorders Unit, Neurology Department, Hospital de la Santa Creu I Sant Pau, Universidad Aut\u00f3noma de Barcelona, Barcelona, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rocio","family":"Garcia-Uzquiano","sequence":"additional","affiliation":[{"name":"Institut de Recerca Sant Joan de D\u00e9u"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nancy Carolina","family":"\u00d1ungo Garz\u00f3n","sequence":"additional","affiliation":[{"name":"Neuromuscular Unit Unit and Neuromuscular Research Group, Department of Neurology, Hospital Universitario y Polit\u00e9cnico la Fe, IIS La Fe, Valencia, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karolina","family":"Aragon-Gawinska","sequence":"additional","affiliation":[{"name":"Neuromuscular Unit Unit and Neuromuscular Research Group, Department of Neurology, Hospital Universitario y Polit\u00e9cnico la Fe, IIS La Fe, Valencia, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mar","family":"Garc\u00eda Romero","sequence":"additional","affiliation":[{"name":"Hospital Universitario La Paz"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jesica Mar\u00eda","family":"Exp\u00f3sito-Escudero","sequence":"additional","affiliation":[{"name":"Hospital Sant Joan de D\u00e9u"},{"name":"Institut de Recerca Sant Joan de D\u00e9u"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Carrera-Garc\u00eda","sequence":"additional","affiliation":[{"name":"Hospital Sant Joan de D\u00e9u"},{"name":"Institut de Recerca Sant Joan de D\u00e9u"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mercedes","family":"L\u00f3pez-Lobato","sequence":"additional","affiliation":[{"name":"Neuromuscular Research Unit, Department of Pediatric Neurology, Hospital Universitario Virgen del Roc\u00edo, Universidad de Sevilla, Seville, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carmen","family":"Paradas","sequence":"additional","affiliation":[{"name":"Neuromuscular Research Unit, Department of Neurology, Hospital Universitario Virgen del Roc\u00edo, Universidad deSevilla, Seville, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Gonz\u00e1lez Mera","sequence":"additional","affiliation":[{"name":"Neuromuscular Research Unit, Department of Neurology, Hospital Universitari de Bellvitge, Hospitalet de Llobregat, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mireia","family":"\u00c1lvarez Molinero","sequence":"additional","affiliation":[{"name":"Pediatric Neuromuscular Unit, Euro-NMD, Pediatric Neurology, Vall d\u2019Hebron Institut de Recerca (VHIR), Hospital Universitari Vall d\u2019Hebron, Vall d\u2019Hebron Barcelona Hospital Campus, Barcelona, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"G\u00f3mez Andr\u00e9s","sequence":"additional","affiliation":[{"name":"Pediatric Neuromuscular Unit, Euro-NMD, Pediatric Neurology, Vall d\u2019Hebron Institut de Recerca (VHIR), Hospital Universitari Vall d\u2019Hebron, Vall d\u2019Hebron Barcelona Hospital Campus, Barcelona, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esther","family":"Toro","sequence":"additional","affiliation":[{"name":"Pediatric Rehabilitation Unit, Physical Medicine and Rehabilitation Department. 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