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Using Observational Data to Inform HIV Policy Change for Children and Youth

Sohn, AH; Judd, A; Mofenson, L; Vicari, M; Jerene, D; Leroy, V; Bekker, L-G; (2018) Using Observational Data to Inform HIV Policy Change for Children and Youth. Journal of Acquired Immune Deficiency Syndromes , 78 (S1) S22-S26. 10.1097/QAI.0000000000001745. Green open access

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Abstract

Observational data characterizing the pediatric and adolescent HIV epidemics in real-world settings are critical to informing clinical guidelines, governmental HIV programs, and donor prioritization. Global expertise in curating and analyzing these data has been expanding, with increasingly robust collaborations and the identification of gaps in existing surveillance capacity. In this commentary, we describe existing sources of observational data for children and youth living with HIV, focusing on larger regional and global research cohorts, and targeted surveillance studies and programs. Observational data are valuable resources to cross-validate other research and to monitor the impact of changing HIV program policies. Observational studies were among the first to highlight the growing population of children surviving perinatal HIV and transitioning to adolescence and young adulthood, and have raised serious concerns about high rates of treatment failure, loss to follow-up, and death among older perinatally infected youth. The use of observational data to inform modeling of the current global epidemic, predict future patterns of the youth cascade, and facilitate antiretroviral forecasting are critical priorities and key end products of observational HIV research. Greater investments into data infrastructure are needed at the local level to improve data quality and at the global level to faciliate reliable interpretation of the evolving patterns of the pediatric and youth epidemics. Although this includes harmonized data forms, use of unique patient identifiers to allow for data linkages across routine data sets and electronic medical record systems, and competent data managers and analysts are essential to make optimal use of the data collected.

Type: Article
Title: Using Observational Data to Inform HIV Policy Change for Children and Youth
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1097/QAI.0000000000001745
Publisher version: http://dx.doi.org/10.1097/QAI.0000000000001745
Language: English
Additional information: Copyright © 2018 The Author(s). Published by Wolters Kluwer Health, Inc. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Keywords: children, adolescent, HIV, cohort, data, observational
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology > MRC Clinical Trials Unit at UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10054474
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