Patient-reported impact of Charcot-Marie-Tooth disease: protocol for a real-world digital lifestyle study.

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作者： Florian P,Thomas ^[1] ; Mario,Saporta ^[2] ; Shahram,Attarian ^[3] ; Teresa,Sevilla ^[4] ; Rafael Sivera,Mascaró ^[5] ; Gian Maria,Fabrizi ^[6] ; Filippo,Genovese ^[7] ; Amy,Gray ^[8] ; Simon,Bull ^[9] ; Daniel,Tanesse ^[10] ; Manuel,Rego ^[11] ; Allison,Moore ^[12] ; Courtney,Hollett ^[12] ; Katia,Monteiro ^[13] ; Xavier,Paoli ^[13] ; Samuel,Llewellyn ^[14] ; Mark,Larkin ^[14] ; Youcef,Boutalbi ^[13]

作者单位： Hackensack Meridian School of Medicine, Hackensack University Medical Center, Hackensack, NJ, USA. ^[1] University of Miami Miller School of Medicine, Miami, FL, USA. ^[2] CHU de Marseille-Hôpital de la Timone, Marseille, France. ^[3] University of Valencia, Hospital Universitari i Politècnic La Fe, Valencia, Spain. ^[4] Hospital Francesc de Borja, Gandia, Spain. ^[5] Department of Neurosciences, Biomedicine & Movement Sciences, University of Verona, Verona, Italy. ^[6] ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV, Bologna, Italy. ^[7] Charcot-Marie-Tooth Association, Glenolden, PA, USA. ^[8] Charcot-Marie-Tooth UK, Christchurch, UK. ^[9] CMT France, Saint-Alban, France. ^[10] Federación Española de Enfermedades Neuromusculares, Barcelona, Spain. ^[11] Hereditary Neuropathy Foundation, New York, NY, USA. ^[12] Pharnext, Paris, France. ^[13] Vitaccess Ltd, Oxford, UK. ^[14]

关键词 Charcot-Marie-Tooth disease burden of illness international observational patient-reported outcomes

主题词夏科-马里-图斯病(Charcot-Marie-Tooth Disease);女(雌)性(Female);人类(Humans);生活方式(Life Style);男(雄)性(Male);前瞻性研究(Prospective Studies)

DOI 10.2217/nmt-2020-0044

PMID 33086913

发布时间 2021-10-14

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