Registry Linkage to Improve Mortality Ascertainment and Assessment of Engagement in Care in Brazil, Mexico, and Peru
Registry Linkage to Improve Mortality Ascertainment and Assessment of Engagement in Care in Brazil, Mexico, and Peru
批准号:
10013604
负责人:
Stephany Norah Duda
金额:
$21.98万
依托单位国家:
美国
项目类别:
财政年份:
2020
资助国家:
美国
项目状态:
已结题
起止时间:
2020-02-10 至 2022-01-31
关键词:
AIDS/HIV problemAcquired Immunodeficiency SyndromeAddressAdultAffectAfrica South of the SaharaAge DistributionAlgorithmsArgentinaBrazilCD4 Lymphocyte CountCaribbean regionCaringCentral AmericaCessation of lifeChildChileClinicClinicalClinical DataClinical ResearchCollaborationsContinuity of Patient CareCountryDataData ReportingData SetData SourcesDatabasesDisease ProgressionDropsEpidemicEpidemiologyEventFrequenciesFundingFutureGuidelinesHIVHIV-1HaitiHealthHealthcareHome environmentHondurasIncomeIndividualInformaticsInformation SystemsInfrastructureInternationalInterventionJointsKnowledgeLaboratoriesLatin AmericaLatin AmericanLeadMeasurementMeasuresMedicalMethodologyMexicoModelingNational Health ProgramsNatureOutcomeOutcome AssessmentPan American Health OrganizationPatient CarePatientsPeruPharmacy facilityPoliciesPopulationPopulation SurveillanceProcessPublic HealthQuality of CareRecording of previous eventsRecordsRegistriesReportingResearchResearch PersonnelResearch Project GrantsResourcesRiskSelection BiasSex DistributionSiteSourceSouth AmericaSystemTechniquesUnited NationsValidationViralViral Load resultVital StatusVotingWeightWorkWorld Health Organizationantiretroviral therapybaseclinical careclinical research sitecohortcomputerizedcostexperiencefight againstfollow-upfrontierhealth organizationimprovedimproved outcomeindexinginnovationmortalitypopulation healthprogramspublic health insurancepublic health relevanceresearch studysuccessviral RNA
中文摘要
项目概要(摘要)
艾滋病毒仍然是拉丁美洲的一个巨大公共卫生挑战,有近180万成年人感染艾滋病毒。
本区域中低收入环境中的艾滋病毒问题。为了确定主要风险群体并部署相关的
为了结束艾滋病流行的干预措施,研究人员和公共卫生组织需要高质量的数据
关于患者在临床护理中的保留,抗逆转录病毒疗法(ART)的使用和死亡率估计。临床
队列是衡量护理质量和频率的一个很好的数据来源,但只能提供
由于后续损失,持续参与和各种临床结果的测量不完善-
上(LTFU)。在特定临床队列研究中心失访的个体似乎从研究中“消失”,
数据点,但实际上可能会经历无声的转移(其中患者在没有通知的情况下切换诊所),
真正的护理缺口(其中患者确实停止了医疗护理)或未观察到的致命事件。
像世界卫生组织(WHO)这样的组织目前使用事后分析方法来纠正
LTFU,但没有拉丁美洲的校正系数。因此,世卫组织目前正在申请
从撒哈拉以南非洲到拉丁美洲,那里的人口可能非常不同。
我们建议通过临床和生命结局之间的联系,
数据来源和完善的州/省或国家登记处。这种注册表链接的跟踪策略
对于可能已经是资源的临床站点来说,具有相对低成本和低工作量的优点,
受约束。由此产生的LTFU的修订估计值可以改善参与结果的测量,
减少这些背景下研究中潜在的选择偏差和错误分类错误,并告知
研究人员和公共卫生利益相关者。
加勒比、中美洲和南美洲艾滋病毒流行病学网络是拉丁美洲的
最大的观察性艾滋病毒队列,并提供了丰富的数据来源,在其中进行这项工作。几
参与的队列研究中心位于公共卫生基础设施健全的国家,
药房、实验室和生命状态登记处或监测系统。事实上,其中一些网站
目前正在与各自的卫生部开展登记联系活动。CCASAnet还拥有
具有开展合作研究项目的丰富经验,这些项目涉及护理和风险的参与-
人口定义相关性。本研究的目的1将改善患者死亡率和结局确定
通过与CCASAnet网站的药房、实验室和生命状态登记处的链接,
和国家登记册。本研究的目标2是使用经修订的
患者死亡率和LTFU数据,报告结果沿着巴西的最佳登记研究检索策略,
墨西哥和秘鲁。
英文摘要
PROJECT SUMMARY (ABSTRACT)
HIV remains a massive public health challenge in Latin America, with nearly 1.8 million adults living with
HIV in the region's low- and middle-income settings. In order to identify key risk groups and deploy relevant
interventions to end the HIV epidemic, researchers and public health organizations need high quality data
regarding patient retention in clinical care, antiretroviral therapy (ART) use, and mortality estimates. Clinical
cohorts are an excellent data source for measuring the quality and frequency of care, but can provide only
imperfect measurements of sustained engagement and various clinical outcomes because of losses to follow-
up (LTFU). Individuals lost to follow-up at particular clinical cohort sites appear to have “disappeared” from the
point of the data, but may in fact experience silent transfers (wherein patients switch clinics without notice),
true gaps in care (wherein patients have truly discontinued medical care), or an unobserved fatal event.
Groups like the World Health Organization (WHO) currently use post hoc analytic approaches to correct for
LTFU, but no correction factors are available for Latin America. As a result, the WHO is currently applying
estimates from sub-Saharan Africa to Latin America, where the populations may be very different.
We propose to measure clinical and vital outcomes in the lost population through linkages between clinical
data sources and well-established state/provincial or national registries. This tracing strategy of registry linkage
has the benefit of being relatively low-cost and low-effort for clinical sites that may already be resource-
constrained. The resulting revised estimates of LTFU could improve engagement outcome measurements,
reduce potential selection bias and misclassification errors in research from these settings, and inform both
researchers and public health stakeholders.
The Caribbean, Central and South America network for HIV epidemiology (CCASAnet) is Latin America's
largest observational HIV cohort and provides a rich data source in which to conduct this work. Several
participating cohort sites are located in countries with robust public health infrastructure, including reliable
pharmacy, laboratory, and vital status registries or surveillance systems. In fact, several of these sites are
currently engaged in registry linkage activities with their respective health ministries. CCASAnet also has
extensive experience conducting collaborative research projects addressing engagement in care and risk-
population-defining correlates. Aim 1 of this study will improve patient mortality and outcome ascertainment
through linkage to pharmacy, laboratory, and vital status registries at CCASAnet sites with available regional
and national registries. Aim 2 of this study will be to replicate CCASAnet regional analyses using revised
patient mortality and LTFU data and report findings along with optimal registry search strategies for Brazil,
Mexico, and Peru.
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会议论文
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财政年份:2016
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负责人:Stephany Norah Duda
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依托单位:
海外基金