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Research priorities in multiple sclerosis in Latin America: A multi-stakeholder call to action to improve patients care: Research priorities in MS in LATAM.
Rojas, Juan I; Carnero Contentti, Edgar; Abad, Patricio; Aguayo, Adriana; Alonso, Ricardo; Bauer, Johana; Becker, Jefferson; Bustos, Andrea K; Carcamo, Claudia A; Carra, Adriana; Correa Diaz, Edgard P; Correale, Jorge; Cristiano, Edgardo; Diaz, Alejandro J; Fernandez Liguori, Nora; Flores, Jose; Fruns, Manuel; Garcea, Orlando; Giachello, Susana M; Godoy, Melisa D; Gracia, Fernando; Hamuy, Victor F; Henestroza, Paula R; Navarra, Javier A; Navas, Carlos; Patrucco, Liliana; Perez Bruno, Magdalena; Prato, Andrea S; Rivera, Victor M; Rosa Martinez, Alma R; Vanotti, Sandra; Vazquez, Macarena; Vizcarra, Darwin; Ysrraelit, Maria C; Alonso Serena, Marina.
Afiliação
  • Rojas JI; Centro de Esclerosis Múltiple de Buenos Aires, Argentina; Servicio de Neurología, Hospital Universitario CEMIC, Buenos Aires, Argentina. Electronic address: rojasjuanignacio@gmail.com.
  • Carnero Contentti E; Neuroimmunology Unit, Department of Neuroscience, Hospital Alemán de Buenos Aires, Argentina.
  • Abad P; Servicio Neurologia, Hospital Metropolitano de Quito, Ecuador.
  • Aguayo A; Departamento de Neurociencias. Centro Universitario Ciencias de la Salud. Universidad de Guadalajara, México.
  • Alonso R; Centro Universitario de Esclerosis Múltiple, Hospital Ramos Mejía, Buenos Aires, Argentina; Servicio de Neurología, Hospital Universitario Sanatorio Guemes, Buenos Aires, Argentina.
  • Bauer J; EMA, esclerosis múltiple Argentina, Buenos Aires, Argentina.
  • Becker J; Brain Institute of Rio Grande do Sul, Pontifical Catholic University of Rio Grande do Sul (PUCRS), Porto Alegre, Brasil.
  • Bustos AK; Fundación AlunCo, Buenos Aires, Argentina.
  • Carcamo CA; Departamento de Neurologia, Pontificia Universidad Católica de Chile, Chile.
  • Carra A; MS Section. Hospital Britanico Buenos Aires, Argentina.
  • Correa Diaz EP; Hospital de Especialidades Carlos Andrade Marín, Quito, Ecuador.
  • Correale J; Departamento de Neurologia, FLENI, Buenos Aires, Argentina.
  • Cristiano E; Servicio de Neurología, Hospital Universitario CEMIC, Buenos Aires, Argentina.
  • Diaz AJ; Instituto Guatemalteco de Seguridad Social, Guatemala.
  • Fernandez Liguori N; Servicio de Neurología, Hospital Universitario Sanatorio Guemes, Buenos Aires, Argentina; Hospital Enrique Tornu, Buenos Aires, Argentina.
  • Flores J; Instituto Nacional de Neurología y Neurocirugía, Ciudad de México, México.
  • Fruns M; Clinica Las Condes, Santiago de Chile, Chile.
  • Garcea O; Servicio de Neurología, Hospital Universitario Sanatorio Guemes, Buenos Aires, Argentina.
  • Giachello SM; ALCEM - Asociacion de Lucha contra la Esclerosis Multiple, Buenos Aires, Argentina.
  • Godoy MD; Fundación AlunCo, Buenos Aires, Argentina.
  • Gracia F; Clinica de Esclerosis Multiple, Servicio de Neurologia Hospital Santo Tomas, Panama.
  • Hamuy VF; Departamento de Neurologia, Hospital IMT, Paraguay.
  • Henestroza PR; ALCEM - Asociacion de Lucha contra la Esclerosis Multiple, Buenos Aires, Argentina.
  • Navarra JA; Fundación AlunCo, Buenos Aires, Argentina.
  • Navas C; Clinica Enfermedad Desmielinizante Clinica Universitaria Colombia, Colombia.
  • Patrucco L; Servicio de Neurología, Hospital Italiano de Buenos Aires, Argentina; Unidad de Esclerosis Múltiple y enfermedades desmielinizantes, Hospital Italiano de Buenos Aires, Argentina.
  • Perez Bruno M; Fundación AlunCo, Buenos Aires, Argentina.
  • Prato AS; EMUR - Esclerosis Múltiple Uruguay, Uruguay.
  • Rivera VM; Baylor College of Medicine, Houston, TX, United States.
  • Rosa Martinez AR; nstituto Nacional de Neurología y Neurocirugía "MVS", Ciudad de México, México.
  • Vanotti S; Centro Universitario de Esclerosis Múltiple, Hospital Ramos Mejía, Buenos Aires, Argentina.
  • Vazquez M; Departamento de Neurología, Escuela de Medicina Pontificia Universidad Católica de Chile, Chile.
  • Vizcarra D; Hypnos Instituto del Sueño, Clínica San Felipe, Universidad Peruana Cayetano Heredia, Lima, Peru.
  • Ysrraelit MC; Departamento de Neurologia, FLENI, Buenos Aires, Argentina.
  • Alonso Serena M; Clinical Research Section, Hospital Italiano de Buenos Aires, Argentina.
Mult Scler Relat Disord ; 53: 103038, 2021 Aug.
Article em En | MEDLINE | ID: mdl-34090128
As human and economic resources are limited, especially in Latin America (LATAM), it is important to identify research priorities to improve multiple sclerosis (MS) patients care in the region. The objective was to generate a multidisciplinary consensus on research priorities in MS for patients care in LATAM by involving healthcare professionals and MS patient associations. METHODS: consensus was reached through a four-step modified Delphi method designed to identify and rate research priorities in MS in LATAM. The process consisted of two qualitative assessments, a general ranking phase and a consensus meeting followed by a more detailed ranking phase RESULTS: a total of 62 participants (35 neurologists, 4 nurses, 12 kinesiologists, 7 neuropsychologists and 4 patient association members) developed the process. At the final ranking stage following the consensus meeting, each participant provided their final rankings, and the top priority research questions were outlined. 11 research priorities were identified focusing on healthcare access, costs of the disease, physical and cognitive evaluation and rehabilitation, quality of life, symptoms management, prognostic factors, the need of MS care units and patient's management in emergencies like COVID-19. CONCLUSION: this work establishes MS research priorities in LATAM from multiple perspectives. To pursue the actions suggested could launch the drive to obtain information that will help us to better understand the disease in our region and, especially, to better care for affected patients.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: COVID-19 / Esclerose Múltipla Tipo de estudo: Prognostic_studies / Qualitative_research Aspecto: Patient_preference Limite: Humans Idioma: En Revista: Mult Scler Relat Disord Ano de publicação: 2021 Tipo de documento: Article País de publicação: Holanda

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: COVID-19 / Esclerose Múltipla Tipo de estudo: Prognostic_studies / Qualitative_research Aspecto: Patient_preference Limite: Humans Idioma: En Revista: Mult Scler Relat Disord Ano de publicação: 2021 Tipo de documento: Article País de publicação: Holanda