Helena L Pike Welch, Gregory Guest, Halima Garba, Gabriel A Carrillo, Allyn M Damman, Warren A Kibbe
{"title":"社区参与的公共数据要素开发方法：RADx-UP Long COVID公共数据要素工作组的案例研究。","authors":"Helena L Pike Welch, Gregory Guest, Halima Garba, Gabriel A Carrillo, Allyn M Damman, Warren A Kibbe","doi":"10.1093/jamiaopen/ooaf046","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>In response to requests from several Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) community-engaged research projects to include Long COVID common data elements (CDEs) in the existing RADx-UP CDEs, the RADx-UP Coordination and Data Collection Center (CDCC) leadership formed the Long COVID CDEs Task Force.</p><p><strong>Materials and methods: </strong>The Task Force, composed mainly of community partners and RADx-UP project members, participated in various activities to evaluate the Long COVID CDEs fit for purpose from the Researching COVID to Enhance Recovery (RECOVER) program for RADx-UP use.</p><p><strong>Results and discussion: </strong>The Task Force's efforts led to a compilation of lessons learned and the creation of a novel set of 28 CDEs that are appropriate for community-engaged research in Long COVID.</p><p><strong>Conclusion: </strong>Utilization of standardized CDEs does not always work for the communities involved in the research, but creation of a community-involved task force can lead to a meaningful, rich set of CDEs.</p>","PeriodicalId":36278,"journal":{"name":"JAMIA Open","volume":"8 3","pages":"ooaf046"},"PeriodicalIF":2.5000,"publicationDate":"2025-06-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12136053/pdf/","citationCount":"0","resultStr":"{\"title\":\"A community-engaged approach to developing common data elements: a case study from the RADx-UP Long COVID common data elements Task Force.\",\"authors\":\"Helena L Pike Welch, Gregory Guest, Halima Garba, Gabriel A Carrillo, Allyn M Damman, Warren A Kibbe\",\"doi\":\"10.1093/jamiaopen/ooaf046\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>In response to requests from several Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) community-engaged research projects to include Long COVID common data elements (CDEs) in the existing RADx-UP CDEs, the RADx-UP Coordination and Data Collection Center (CDCC) leadership formed the Long COVID CDEs Task Force.</p><p><strong>Materials and methods: </strong>The Task Force, composed mainly of community partners and RADx-UP project members, participated in various activities to evaluate the Long COVID CDEs fit for purpose from the Researching COVID to Enhance Recovery (RECOVER) program for RADx-UP use.</p><p><strong>Results and discussion: </strong>The Task Force's efforts led to a compilation of lessons learned and the creation of a novel set of 28 CDEs that are appropriate for community-engaged research in Long COVID.</p><p><strong>Conclusion: </strong>Utilization of standardized CDEs does not always work for the communities involved in the research, but creation of a community-involved task force can lead to a meaningful, rich set of CDEs.</p>\",\"PeriodicalId\":36278,\"journal\":{\"name\":\"JAMIA Open\",\"volume\":\"8 3\",\"pages\":\"ooaf046\"},\"PeriodicalIF\":2.5000,\"publicationDate\":\"2025-06-04\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12136053/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"JAMIA Open\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1093/jamiaopen/ooaf046\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/6/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q2\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"JAMIA Open","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/jamiaopen/ooaf046","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/6/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
A community-engaged approach to developing common data elements: a case study from the RADx-UP Long COVID common data elements Task Force.
Objectives: In response to requests from several Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) community-engaged research projects to include Long COVID common data elements (CDEs) in the existing RADx-UP CDEs, the RADx-UP Coordination and Data Collection Center (CDCC) leadership formed the Long COVID CDEs Task Force.
Materials and methods: The Task Force, composed mainly of community partners and RADx-UP project members, participated in various activities to evaluate the Long COVID CDEs fit for purpose from the Researching COVID to Enhance Recovery (RECOVER) program for RADx-UP use.
Results and discussion: The Task Force's efforts led to a compilation of lessons learned and the creation of a novel set of 28 CDEs that are appropriate for community-engaged research in Long COVID.
Conclusion: Utilization of standardized CDEs does not always work for the communities involved in the research, but creation of a community-involved task force can lead to a meaningful, rich set of CDEs.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
