全球疾病登记处对于获取罕见疾病的常见患者相关信息至关重要。允许病人和他们的家人在保险箱里提供关于他们病情的信息,可访问,和引人入胜的方式,使研究人员能够进行旨在改善结果的关键研究。通常,英语是这些全球数字健康平台的默认选择语言。不幸的是,语言障碍可以显著抑制非英语参与者的参与。此外,数据质量和完整性存在妥协的可能性。相比之下,跨国商业实体以其所在国家的当地语言提供对其网站的访问,并经常提供反映种族多样性的多种选择。本文介绍了全球Angelman综合征登记处(GASR)如何使用一种新颖的方法为其网站启用多种语言翻译的案例研究。使用“半自动语言翻译”方法,GASR,它最初于2016年9月以英语推出,现在有其他几种语言版本。2020年,GASR采用了一种新颖的方法,使用众包和机器翻译工具,以西班牙语提供GASR,繁体中文,意大利语,和印地语。因此,西班牙的入学率增加了124%,拉丁美洲占67%,亚洲占46%,意大利24%,印度占43%。我们在这里描述我们的方法,我们认为,这提供了一个具有成本效益和及时翻译的机会,以响应注册表的变化,并有助于建立和保持与全球疾病社区的接触。
Global disease registries are critical to capturing common patient related information on rare illnesses, allowing patients and their families to provide information about their condition in a safe, accessible, and engaging manner that enables researchers to undertake critical research aimed at improving outcomes. Typically, English is the default language of choice for these global digital health platforms. Unfortunately, language barriers can significantly inhibit participation from non-English speaking participants. In addition, there is potential for compromises in data quality and completeness. In contrast, multinational commercial entities provide access to their websites in the local language of the country they are operating in, and often provide multiple options reflecting ethnic diversity. This paper presents a
case study of how the Global Angelman Syndrome Registry (GASR) has used a novel approach to enable multiple language translations for its website. Using a \"semi-automated language translation\" approach, the GASR, which was originally launched in English in September 2016, is now available in several other languages. In 2020, the GASR adopted a novel approach using crowd-sourcing and machine translation tools leading to the availability of the GASR in Spanish, Traditional Chinese, Italian, and Hindi. As a result, enrolments increased by 124% percent for Spain, 67% percent for Latin America, 46% percent for Asia, 24% for Italy, and 43% for India. We describe our approach here, which we believe presents an opportunity for cost-effective and timely translations responsive to changes to the registry and helps build and maintain engagement with global disease communities.