title: Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.
abstract: Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure ( https://hubzero.org ), an open source software platform. The hub database components support: (1) data management - the "databases" component creates, configures, and manages database access, backup, repositories, applications, and access control; (2) data collection - the "forms" component is used to build customized web case report forms that incorporate common data elements and include tailored form submit processing to handle error checking, data validation, and data linkage as the data are stored to the database; and (3) data exploration - the "dataviewer" component provides powerful methods for users to view, search, sort, navigate, explore, map, graph, visualize, aggregate, drill-down, compute, and export data from the database. The Sankofa cyber data management tool supports a user-friendly, secure, and systematic collection of all data. We have screened more than 400 child-caregiver dyads and enrolled nearly 300 dyads, with tens of thousands of data elements. The dataviews have successfully supported all data exploration and analysis needs of the Sankofa Project. Moreover, the ability of the sites to query and view data summaries has proven to be an incentive for collecting complete and accurate data. The data system has all the desirable attributes of an electronic data capture tool. It also provides an added advantage of building data management capacity in resource-limited settings due to its innovative data query and summary views and availability of real-time support by the data management team.
authors.affiliation: a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.
authors.forename: Ann Christine
authors.initials: AC
authors.lastname: Catlin
authors.affiliation: a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.
authors.forename: Sumudinie
authors.initials: S
authors.lastname: Fernando
authors.affiliation: a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.
authors.forename: Ruwan
authors.initials: R
authors.lastname: Gamage
authors.affiliation: b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra , Ghana.
authors.forename: Lorna
authors.initials: L
authors.lastname: Renner
authors.affiliation: c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.
authors.forename: Sampson
authors.initials: S
authors.lastname: Antwi
authors.affiliation: b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra , Ghana.
authors.forename: Jonas Kusah
authors.initials: JK
authors.lastname: Tettey
authors.affiliation: c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.
authors.forename: Kofi Aikins
authors.initials: KA
authors.lastname: Amisah
authors.affiliation: d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT , USA.
authors.forename: Tassos
authors.initials: T
authors.lastname: Kyriakides
authors.affiliation: d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT , USA.
authors.forename: Xiangyu
authors.initials: X
authors.lastname: Cong
authors.affiliation: e Yale School of Nursing , West Haven , CT , USA.
authors.forename: Nancy R
authors.initials: NR
authors.lastname: Reynolds
authors.affiliation: f Department of Pediatrics , Yale School of Medicine , New Haven , CT , USA.|g Department of Pharmacology , Yale School of Medicine , New Haven , CT , USA.
authors.forename: Elijah
authors.initials: E
authors.lastname: Paintsil
mesh_terms: D000328:Adult; D002648:Child; D002986:Clinical Trials as Topic; D000068598:Data Accuracy; D016208:Databases, Factual; D003906:Developing Countries; D030881:Disclosure; D005260:Female; D005869:Ghana; D015658:HIV Infections / Q000517:prevention & control / Q000523:psychology*; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D016730:Program Development; D012984:Software
keywords: HIV disclosure; cyber infrastructure; dataviews; electronic data capture; resource-limited setting