{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,24]],"date-time":"2026-03-24T00:50:28Z","timestamp":1774313428947,"version":"3.50.1"},"reference-count":32,"publisher":"Georg Thieme Verlag KG","issue":"02","license":[{"start":{"date-parts":[[2026,3,23]],"date-time":"2026-03-23T00:00:00Z","timestamp":1774224000000},"content-version":"vor","delay-in-days":50,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Arq Neuropsiquiatr"],"published-print":{"date-parts":[[2026,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Duchenne muscular dystrophy is a rare, progressive neuromuscular disorder primarily affecting boys, and it follows a predictable course. Early intervention is essential for effective management, but disparities in the care of patients with rare diseases hinder access to optimal treatment.<\/jats:p>\n                  <jats:p>To identify unmet needs and challenges in the care of patients with Duchenne muscular dystrophy within the Brazilian public health system compared with the private system.<\/jats:p>\n                  <jats:p>A cross-sectional observational study using the Delphi method was conducted with ten neurologists specialized in Duchenne muscular dystrophy. The specialists participated in rounds of surveys to reach consensus on key issues, including diagnosis, treatment, and care. Data was analyzed using descriptive statistics.<\/jats:p>\n                  <jats:p>According to the Delphi panel, the public health system had an average diagnostic delay of 25 months compared with 10 months in the private sector. Although genetic testing is critical, it is not funded by the public health system. Other barriers included delayed corticosteroid treatment, limited access to multidisciplinary care, and insufficient medical devices. Patients in the public health system lost ambulation earlier (11\u201312 years of age) than those in the private sector (13\u201314 years of age). Life expectancy was significantly shorter in the public system, averaging 19 to 20 years compared with 26 to 27 years of age in the private sector.<\/jats:p>\n                  <jats:p>There are significant disparities in the care of patients with Duchenne muscular dystrophy within Brazil's public health system, resulting in worse outcomes. Enhancing access to genetic testing and early multidisciplinary care is crucial to improve the quality of life and survival of these patients.<\/jats:p>","DOI":"10.1055\/s-0046-1817019","type":"journal-article","created":{"date-parts":[[2026,3,23]],"date-time":"2026-03-23T23:57:23Z","timestamp":1774310243000},"page":"001-010","source":"Crossref","is-referenced-by-count":0,"title":["Unmet Needs in the Care of Patients with Duchenne Muscular Dystrophy in Brazil"],"prefix":"10.1055","volume":"84","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2591-4354","authenticated-orcid":false,"given":"Alexandra Prufer de Queiroz Campos","family":"Araujo","sequence":"additional","affiliation":[{"name":"Universidade Federal do Rio de Janeiro, Faculdade de Medicina, Departamento de Pediatria, Rio de Janeiro RJ, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1548-9497","authenticated-orcid":false,"given":"Andre Vin\u00edcius Soares","family":"Barbosa","sequence":"additional","affiliation":[{"name":"Hospital Infantil Jo\u00e3o Paulo II, Belo Horizonte MG, Brazil."},{"name":"Santa Casa de Belo Horizonte, Belo Horizonte MG, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-1232-5896","authenticated-orcid":false,"given":"Michele Michelin","family":"Becker","sequence":"additional","affiliation":[{"name":"Hospital de Cl\u00ednicas de Porto Alegre, Departamento de Pediatria, Porto Alegre RS, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3848-6216","authenticated-orcid":false,"given":"Andressa Araujo","family":"Braga","sequence":"additional","affiliation":[{"name":"Instituto Nacional de Cardiologia, N\u00facleo de Avalia\u00e7\u00e3o de Tecnologias em Sa\u00fade, Rio de Janeiro RJ, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6987-3086","authenticated-orcid":false,"given":"Marcela C\u00e2mara Machado","family":"Costa","sequence":"additional","affiliation":[{"name":"Escola Bahiana de Medicina e Sa\u00fade P\u00fablica, Salvador BA, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5446-5968","authenticated-orcid":false,"given":"Alulin T\u00e1cio Quadros Santos Monteiro","family":"Fonseca","sequence":"additional","affiliation":[{"name":"Universidade Federal de S\u00e3o Paulo, Escola Paulista de Medicina, Departamento de Neurologia e Neurocirurgia, S\u00e3o Paulo SP, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0898-2419","authenticated-orcid":false,"given":"Marcondes Cavalcante","family":"Fran\u00e7a Junior","sequence":"additional","affiliation":[{"name":"Universidade Estadual de Campinas, Faculdade de Ci\u00eancias M\u00e9dicas, Departamento de Neurologia, Campinas SP, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3335-1491","authenticated-orcid":false,"given":"Juliana Gurgel","family":"Giannetti","sequence":"additional","affiliation":[{"name":"Universidade Federal de Minas Gerais, Faculdade de Medicina, Departamento de Pediatria, Belo Horizonte MG, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1641-9386","authenticated-orcid":false,"given":"Vanessa Van Der","family":"Linden","sequence":"additional","affiliation":[{"name":"Hospital Maria Lucinda, Recife PE, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0210-4877","authenticated-orcid":false,"given":"Carlos Alberto da Silva","family":"Magliano","sequence":"additional","affiliation":[{"name":"ASAS Valor em Sa\u00fade, Rio de Janeiro RJ, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0043-5373","authenticated-orcid":false,"given":"Andr\u00e9 Luiz Santos","family":"Pessoa","sequence":"additional","affiliation":[{"name":"Hospital Infantil Albert Sabin, Fortaleza CE, Brazil."},{"name":"Universidade Federal do Cear\u00e1, Fortaleza CE, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4991-6760","authenticated-orcid":false,"given":"Edmar","family":"Zanoteli","sequence":"additional","affiliation":[{"name":"Universidade de S\u00e3o Paulo, Faculdade de Medicina, Departamento de Neurologia, S\u00e3o Paulo SP, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2026,3,23]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"2025","DOI":"10.1016\/S0140-6736(19)32910-1","article-title":"Muscular dystrophies","volume":"394","author":"E 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