The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform.
The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform.
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DOI：
10.2196/36798
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发表时间：
2022-08-10
影响因子：
1.7
通讯作者：
Whittaker, Sadie
中科院分区：
文献类型：
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作者：
Ramiller, Allison;Mudie, Kathleen;Seibert, Elle;Whittaker, Sadie
肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种慢性、复杂、异质性疾病，影响数百万人，缺乏诊断和治疗。大数据，即可以挖掘信息的大量数据的收集，通过剖析异质性、识别亚型和开发个性化治疗，已经改变了人们对许多复杂疾病的理解，比如癌症和多发性硬化症。大数据可能会揭示ME/CFS的相同情况。本研究旨在描述You + ME注册的方案，提出与参与者注册和满意度相关的初步结果，并讨论注册的局限性以及下一步工作。我们开发并启动了You + ME注册表，以收集ME/CFS患者、长冠状病毒感染者（LC）和对照志愿者的纵向健康数据，使用严格的协议，旨在与从类似人群中收集数据的其他小组协调一致。截至2021年9月30日，You + ME登记处拥有超过4200名地理位置不同的参与者（3033/4339,69.9%，ME/CFS患者；833/4339,19.2%，covid -19后患者；473/4339,10.9%，对照志愿者），平均每周注册72名新参与者。使用净推荐分数，它被评为“很棒”，表明注册者可能会向朋友推荐该注册表。目前正在对收集到的数据进行分析，预计在不久的将来会有初步结果。You + ME Registry是一个非常宝贵的资源，因为它集成了一个症状跟踪应用程序和一个生物库，为合格的研究人员提供了一个强大而丰富的数据集。因此，它促进了合作，最终可能会发现病因并帮助加速治疗方法的开发。ClinicalTrials.gov NCT04806620;https://clinicaltrials.gov/ct2/show/NCT04806620 derr1 - 10.2196/36798
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, heterogeneous disease that affects millions and lacks both diagnostics and treatments. Big data, or the collection of vast quantities of data that can be mined for information, have transformed the understanding of many complex illnesses, such as cancer and multiple sclerosis, by dissecting heterogeneity, identifying subtypes, and enabling the development of personalized treatments. It is possible that big data can reveal the same for ME/CFS. This study aims to describe the protocol for the You + ME Registry, present preliminary results related to participant enrollment and satisfaction, and discuss the limitations of the registry as well as next steps. We developed and launched the You + ME Registry to collect longitudinal health data from people with ME/CFS, people with long COVID (LC), and control volunteers using rigorous protocols designed to harmonize with other groups collecting data from similar groups of people. As of September 30, 2021, the You + ME Registry had over 4200 geographically diverse participants (3033/4339, 69.9%, people with ME/CFS; 833/4339, 19.2%, post–COVID-19 people; and 473/4339, 10.9%, control volunteers), with an average of 72 new people registered every week. It has qualified as “great” using a net promotor score, indicating registrants are likely to recommend the registry to a friend. Analyses of collected data are currently underway, and preliminary findings are expected in the near future. The You + ME Registry is an invaluable resource because it integrates with a symptom-tracking app, as well as a biorepository, to provide a robust and rich data set that is available to qualified researchers. Accordingly, it facilitates collaboration that may ultimately uncover causes and help accelerate the development of therapies. ClinicalTrials.gov NCT04806620; https://clinicaltrials.gov/ct2/show/NCT04806620 DERR1-10.2196/36798