{"title":"瑞士多发性硬化症登记处:公民科学的里程碑项目","authors":"Philipp do Canto","doi":"10.54920/scto.2021.rawatch.4.17","DOIUrl":null,"url":null,"abstract":"Since its foundation in 1959, the Swiss Multiple Sclerosis Society (Swiss MS Society) has been supporting people living with multiple sclerosis (MS) in their daily lives. The organisation also provides funding for scientific research and serves as an independent platform for information related to MS. The quest to better understand MS and ultimately find its cure has always been a driver for innovation. Seizing the opportunities created by the emergence of data-driven medicine, the Swiss MS Society created the Swiss MS Registry – the first health registry in Switzerland owned exclusively by a patient organisation.","PeriodicalId":419230,"journal":{"name":"Regulatory Affairs Watch","volume":"30 6 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2020-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Swiss Multiple Sclerosis Registry: A landmark project for citizen science\",\"authors\":\"Philipp do Canto\",\"doi\":\"10.54920/scto.2021.rawatch.4.17\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Since its foundation in 1959, the Swiss Multiple Sclerosis Society (Swiss MS Society) has been supporting people living with multiple sclerosis (MS) in their daily lives. The organisation also provides funding for scientific research and serves as an independent platform for information related to MS. The quest to better understand MS and ultimately find its cure has always been a driver for innovation. Seizing the opportunities created by the emergence of data-driven medicine, the Swiss MS Society created the Swiss MS Registry – the first health registry in Switzerland owned exclusively by a patient organisation.\",\"PeriodicalId\":419230,\"journal\":{\"name\":\"Regulatory Affairs Watch\",\"volume\":\"30 6 1\",\"pages\":\"0\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2020-10-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Regulatory Affairs Watch\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.54920/scto.2021.rawatch.4.17\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Regulatory Affairs Watch","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.54920/scto.2021.rawatch.4.17","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
摘要
自1959年成立以来，瑞士多发性硬化症协会(Swiss MS Society)一直在日常生活中支持多发性硬化症(MS)患者。该组织还为科学研究提供资金，并作为一个与多发性硬化症相关的独立信息平台。寻求更好地了解多发性硬化症并最终找到治疗方法一直是创新的动力。抓住数据驱动医学的出现所带来的机遇，瑞士多发性硬化症协会创建了瑞士多发性硬化症登记处，这是瑞士第一个由患者组织独家拥有的健康登记处。
Swiss Multiple Sclerosis Registry: A landmark project for citizen science
Since its foundation in 1959, the Swiss Multiple Sclerosis Society (Swiss MS Society) has been supporting people living with multiple sclerosis (MS) in their daily lives. The organisation also provides funding for scientific research and serves as an independent platform for information related to MS. The quest to better understand MS and ultimately find its cure has always been a driver for innovation. Seizing the opportunities created by the emergence of data-driven medicine, the Swiss MS Society created the Swiss MS Registry – the first health registry in Switzerland owned exclusively by a patient organisation.
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