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MiNDAUS partnership: a roadmap for the cure and management of motor Neurone disease.
Vucic, Steve; Wray, Naomi; Henders, Anjali; Henderson, Robert D; Talman, Paul; Mathers, Susan; Bellgard, Matthew; Aoun, Samar; Birks, Carol; Thomas, Gethin; Hansen, Catherine; Thomas, Geoff; Hogden, Anne; Needham, Merrilee; Schultz, David; Soulis, Tina; Sheean, Bec; Milne, Jane; Rowe, Dominic; Zoing, Margie; Kiernan, Matthew C.
Afiliación
  • Vucic S; Brain and Nerve Research Center, Concord Clinical School, University of Sydney and Concord Hospital, Sydney, Australia.
  • Wray N; Institute for Molecular Bioscience, The University of Queensland, Brisbane, Australia.
  • Henders A; Institute for Molecular Bioscience, The University of Queensland, Brisbane, Australia.
  • Henderson RD; Royal Brisbane and Women's Hospital, University of Queensland, Brisbane, Australia.
  • Talman P; Deakin University, University Hospital Geelong, Geelong, Australia.
  • Mathers S; Department of Neurology, Calvary Health Care Bethlehem Monash University, Melbourne, Australia.
  • Bellgard M; Office of eResearch, Queensland University of Technology, Brisbane, Australia.
  • Aoun S; Perron Institute for Neurological and translational Science, Perth, Western Australia.
  • Birks C; La Trobe University, Melbourne, Victoria.
  • Thomas G; Motor Neurone Disease Australia, Australia.
  • Hansen C; Motor Neurone Disease Australia, Australia.
  • Thomas G; Thomas MND Research Group, Adelaide, South Australia, Australia.
  • Hogden A; Thomas MND Research Group, Adelaide, South Australia, Australia.
  • Needham M; Australian Institute of Health Service Management, University of Tasmania, Hobart, Tasmania, Australia.
  • Schultz D; Department of Neurology, Fiona Stanley Hospital, CMMIT Murdoch University and School of Medicine, University of Notre Dame, Western Australia, Perth, Australia.
  • Soulis T; Department of Neurology, Flinders Medical Centre, Flinders Drive, Bedford Park, South Australia, Australia.
  • Sheean B; Neuroscience Trials Australia, Melbourne, Australia.
  • Milne J; FightMND, Melbourne, Australia.
  • Rowe D; MND and Me Foundation, Brisbane, Queensland, Australia.
  • Zoing M; MCentre for Motor Neurone Disease Research, Faculty of Medicine, Human and Health Sciences, Macquarie University, Sydney, Australia.
  • Kiernan MC; Brain and Mind Center, University of Sydney, University of Sydney, Sydney, Australia.
Article en En | MEDLINE | ID: mdl-34590512
An innovative approach to patient management, evidence-based policy development, and clinical drug trials is required to provide personalized care and to improve the likelihood of finding an effective treatment for Motor Neurone Disease (MND). The MiNDAus Partnership builds on and extends existing national collaborations in a targeted approach to improve the standard and coordination of care for people living with MND in Australia, and to enhance the prospects of discovering a cure or treatment. Relationships have been developed between leading clinical and research groups as well as patient-centered organizations, care providers, and philanthropy with a shared vision. MiNDAus has established a corporate structure and meets at least biannually to decide on how best to progress research, drug development, and patient management. The key themes are; (i) empowering patients and their family carers to engage in self-management and ensure personalized service provision, treatment, and policy development, (ii) integration of data collection so as to better inform policy development, (iii) unifying patients and carers with advocacy groups, funding bodies, clinicians and academic institutions so as to inform policy development and research, (iv) coordination of research efforts and development of standardized national infrastructure for conducting innovative clinical MND trials that can be harmonized within Australia and with international trials consortia. Such a collaborative approach is required across stakeholders in order to develop innovative management guidelines, underpinned by necessary and evidence-based policy change recommendations, which, will ensure the best patient care until a cure is discovered.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Enfermedad de la Neurona Motora / Esclerosis Amiotrófica Lateral Tipo de estudio: Guideline / Prognostic_studies Límite: Humans País/Región como asunto: Oceania Idioma: En Revista: Amyotroph Lateral Scler Frontotemporal Degener Año: 2022 Tipo del documento: Article País de afiliación: Australia

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Enfermedad de la Neurona Motora / Esclerosis Amiotrófica Lateral Tipo de estudio: Guideline / Prognostic_studies Límite: Humans País/Región como asunto: Oceania Idioma: En Revista: Amyotroph Lateral Scler Frontotemporal Degener Año: 2022 Tipo del documento: Article País de afiliación: Australia