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International Parkinson and Movement Disorder Society Clinical Outcome Assessments are Available in REDCap

电子数据采集 医学 健康保险便携性和责任法案 临床试验 问责 指导委员会 医学教育 研究文章 运动障碍 梅德林 计算机科学 业务 小组讨论 电子数据 电话
作者
Rebecca L.M. Fuller,Mariana HG Monje,Lana M. Chahine,Esther Cubo Delgado,Kathy Dujardin,Arunmozhimaran Elavarasi,Conor Fearon,Cheryl Fitzer‐Attas,Sergiu Groppa,A Jha,Hussain Kehinde Raji,Melissa J. Nirenberg,Santiago Perez Lloret,Cynthia Poon,Ruth Schneider,Travis H. Turner,J. Youn,Tiago Mestre,Álvaro Sánchez‐Ferro
出处
期刊:Movement Disorders [Wiley]
标识
DOI:10.1002/mds.70224
摘要

The members of the International Parkinson and Movement Disorder Society Electronic Clinical Outcome Assessment (MDS eCOA) Committee would like to announce the availability of MDS COAs in REDCap form. REDCap (Research Electronic Data Capture) is a web-based platform for developing and administering electronic scales and surveys, as well as maintaining and organizing collected data. In most academic research settings, REDCap is configured to allow collection of sensitive data in compliance with 21 Code of Federal Regulations (CFR) Part 11, Federal Information Security Modernization Act (FISMA), Health Insurance Portability and Accountability Act (HIPAA), and General Data Protection Regulation (GDPR) standards (https://project-redcap.org/). Previously, academic and clinical users had to create their own versions of the MDS COAs in REDCap. To promote uniformity and for the convenience of the MDS COA licensees, the eCOA committee members created Official MDS Developed REDCap versions of MDS assessments as shown in Figure 1. These REDCap versions are developed through a structured, iterative process, wherein one team member drafts the initial content, and subsequent contributors engage in thorough review and testing to ensure accuracy and quality. A subsequent goal of this project is to develop non-English language REDCap builds based on existing official translations. Individuals interested in assisting with this effort can reach out to [email protected]. To request a REDCAP version of an MDS COA or report an issue with a MDS COA, contact the MDS secretariat at the same address.
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