寻找"真正重要的事情":来自GLUT1DS中以患者为中心的结果的网络调查的见解

Costanza Varesio1, Ludovica Pasca1, Martina Paola Zanaboni2

  • 1Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy; Department of Child Neurology and Psychiatry, IRCCS Mondino Foundation, Full Member of European Reference Network for Rare and Complex Epilepsies, EpiCARE, Pavia, Italy.

概括

葡萄糖载体1型缺陷综合征 (GLUT1DS) 显著影响了核心症状以外的日常生活. 以患者为中心的护理和多学科方法对于改善这种罕见遗传疾病患者的生活质量至关重要.

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