Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.
Identifieur interne : 000274 ( Main/Exploration ); précédent : 000273; suivant : 000275Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.
Auteurs : Ann Christine Catlin [États-Unis] ; Sumudinie Fernando [États-Unis] ; Ruwan Gamage [États-Unis] ; Lorna Renner [Ghana] ; Sampson Antwi [Ghana] ; Jonas Kusah Tettey [Ghana] ; Kofi Aikins Amisah [Ghana] ; Tassos Kyriakides [États-Unis] ; Xiangyu Cong [États-Unis] ; Nancy R. Reynolds [États-Unis] ; Elijah Paintsil [États-Unis]Source :
- AIDS care [ 1360-0451 ] ; 2015.
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.
DOI: 10.1080/09540121.2015.1023246
PubMed: 26616131
Affiliations:
Links toward previous steps (curation, corpus...)
- to stream PubMed, to step Corpus: 000698
- to stream PubMed, to step Curation: 000698
- to stream PubMed, to step Checkpoint: 000698
- to stream Ncbi, to step Merge: 000911
- to stream Ncbi, to step Curation: 000911
- to stream Ncbi, to step Checkpoint: 000911
- to stream Main, to step Merge: 000274
- to stream Main, to step Curation: 000274
Le document en format XML
<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.</title><author><name sortKey="Catlin, Ann Christine" sort="Catlin, Ann Christine" uniqKey="Catlin A" first="Ann Christine" last="Catlin">Ann Christine Catlin</name><affiliation wicri:level="2"><nlm:affiliation>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN </wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation></author><author><name sortKey="Fernando, Sumudinie" sort="Fernando, Sumudinie" uniqKey="Fernando S" first="Sumudinie" last="Fernando">Sumudinie Fernando</name><affiliation wicri:level="2"><nlm:affiliation>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN </wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation></author><author><name sortKey="Gamage, Ruwan" sort="Gamage, Ruwan" uniqKey="Gamage R" first="Ruwan" last="Gamage">Ruwan Gamage</name><affiliation wicri:level="2"><nlm:affiliation>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN </wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation></author><author><name sortKey="Renner, Lorna" sort="Renner, Lorna" uniqKey="Renner L" first="Lorna" last="Renner">Lorna Renner</name><affiliation wicri:level="1"><nlm:affiliation>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra </wicri:regionArea><wicri:noRegion>Accra </wicri:noRegion></affiliation></author><author><name sortKey="Antwi, Sampson" sort="Antwi, Sampson" uniqKey="Antwi S" first="Sampson" last="Antwi">Sampson Antwi</name><affiliation wicri:level="1"><nlm:affiliation>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi </wicri:regionArea><wicri:noRegion>Kumasi </wicri:noRegion></affiliation></author><author><name sortKey="Tettey, Jonas Kusah" sort="Tettey, Jonas Kusah" uniqKey="Tettey J" first="Jonas Kusah" last="Tettey">Jonas Kusah Tettey</name><affiliation wicri:level="1"><nlm:affiliation>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra </wicri:regionArea><wicri:noRegion>Accra </wicri:noRegion></affiliation></author><author><name sortKey="Amisah, Kofi Aikins" sort="Amisah, Kofi Aikins" uniqKey="Amisah K" first="Kofi Aikins" last="Amisah">Kofi Aikins Amisah</name><affiliation wicri:level="1"><nlm:affiliation>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi </wicri:regionArea><wicri:noRegion>Kumasi </wicri:noRegion></affiliation></author><author><name sortKey="Kyriakides, Tassos" sort="Kyriakides, Tassos" uniqKey="Kyriakides T" first="Tassos" last="Kyriakides">Tassos Kyriakides</name><affiliation wicri:level="2"><nlm:affiliation>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author><author><name sortKey="Cong, Xiangyu" sort="Cong, Xiangyu" uniqKey="Cong X" first="Xiangyu" last="Cong">Xiangyu Cong</name><affiliation wicri:level="2"><nlm:affiliation>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author><author><name sortKey="Reynolds, Nancy R" sort="Reynolds, Nancy R" uniqKey="Reynolds N" first="Nancy R" last="Reynolds">Nancy R. Reynolds</name><affiliation wicri:level="2"><nlm:affiliation>e Yale School of Nursing , West Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>e Yale School of Nursing , West Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author><author><name sortKey="Paintsil, Elijah" sort="Paintsil, Elijah" uniqKey="Paintsil E" first="Elijah" last="Paintsil">Elijah Paintsil</name><affiliation wicri:level="2"><nlm:affiliation>f Department of Pediatrics , Yale School of Medicine , New Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>f Department of Pediatrics , Yale School of Medicine , New Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2015">2015</date><idno type="RBID">pubmed:26616131</idno><idno type="pmid">26616131</idno><idno type="doi">10.1080/09540121.2015.1023246</idno><idno type="wicri:Area/PubMed/Corpus">000698</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000698</idno><idno type="wicri:Area/PubMed/Curation">000698</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">000698</idno><idno type="wicri:Area/PubMed/Checkpoint">000698</idno><idno type="wicri:explorRef" wicri:stream="Checkpoint" wicri:step="PubMed">000698</idno><idno type="wicri:Area/Ncbi/Merge">000911</idno><idno type="wicri:Area/Ncbi/Curation">000911</idno><idno type="wicri:Area/Ncbi/Checkpoint">000911</idno><idno type="wicri:Area/Main/Merge">000274</idno><idno type="wicri:Area/Main/Curation">000274</idno><idno type="wicri:Area/Main/Exploration">000274</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.</title><author><name sortKey="Catlin, Ann Christine" sort="Catlin, Ann Christine" uniqKey="Catlin A" first="Ann Christine" last="Catlin">Ann Christine Catlin</name><affiliation wicri:level="2"><nlm:affiliation>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN </wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation></author><author><name sortKey="Fernando, Sumudinie" sort="Fernando, Sumudinie" uniqKey="Fernando S" first="Sumudinie" last="Fernando">Sumudinie Fernando</name><affiliation wicri:level="2"><nlm:affiliation>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN </wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation></author><author><name sortKey="Gamage, Ruwan" sort="Gamage, Ruwan" uniqKey="Gamage R" first="Ruwan" last="Gamage">Ruwan Gamage</name><affiliation wicri:level="2"><nlm:affiliation>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>a Rosen Center for Advanced Computing, Purdue University , West Lafayette , IN </wicri:regionArea><placeName><region type="state">Indiana</region></placeName></affiliation></author><author><name sortKey="Renner, Lorna" sort="Renner, Lorna" uniqKey="Renner L" first="Lorna" last="Renner">Lorna Renner</name><affiliation wicri:level="1"><nlm:affiliation>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra </wicri:regionArea><wicri:noRegion>Accra </wicri:noRegion></affiliation></author><author><name sortKey="Antwi, Sampson" sort="Antwi, Sampson" uniqKey="Antwi S" first="Sampson" last="Antwi">Sampson Antwi</name><affiliation wicri:level="1"><nlm:affiliation>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi </wicri:regionArea><wicri:noRegion>Kumasi </wicri:noRegion></affiliation></author><author><name sortKey="Tettey, Jonas Kusah" sort="Tettey, Jonas Kusah" uniqKey="Tettey J" first="Jonas Kusah" last="Tettey">Jonas Kusah Tettey</name><affiliation wicri:level="1"><nlm:affiliation>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>b Department of Child Health , Korle-Bu Teaching Hospital, School of Medicine and Dentistry, University of Ghana , Accra </wicri:regionArea><wicri:noRegion>Accra </wicri:noRegion></affiliation></author><author><name sortKey="Amisah, Kofi Aikins" sort="Amisah, Kofi Aikins" uniqKey="Amisah K" first="Kofi Aikins" last="Amisah">Kofi Aikins Amisah</name><affiliation wicri:level="1"><nlm:affiliation>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi , Ghana.</nlm:affiliation><country xml:lang="fr">Ghana</country><wicri:regionArea>c Department of Child Health , Komfo Anokye Teaching Hospital, School of Medical Sciences, Kwame Nkrumah University of Science and Technology , Kumasi </wicri:regionArea><wicri:noRegion>Kumasi </wicri:noRegion></affiliation></author><author><name sortKey="Kyriakides, Tassos" sort="Kyriakides, Tassos" uniqKey="Kyriakides T" first="Tassos" last="Kyriakides">Tassos Kyriakides</name><affiliation wicri:level="2"><nlm:affiliation>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author><author><name sortKey="Cong, Xiangyu" sort="Cong, Xiangyu" uniqKey="Cong X" first="Xiangyu" last="Cong">Xiangyu Cong</name><affiliation wicri:level="2"><nlm:affiliation>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>d Yale Center for Analytical Sciences , Yale School of Public Health , New Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author><author><name sortKey="Reynolds, Nancy R" sort="Reynolds, Nancy R" uniqKey="Reynolds N" first="Nancy R" last="Reynolds">Nancy R. Reynolds</name><affiliation wicri:level="2"><nlm:affiliation>e Yale School of Nursing , West Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>e Yale School of Nursing , West Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author><author><name sortKey="Paintsil, Elijah" sort="Paintsil, Elijah" uniqKey="Paintsil E" first="Elijah" last="Paintsil">Elijah Paintsil</name><affiliation wicri:level="2"><nlm:affiliation>f Department of Pediatrics , Yale School of Medicine , New Haven , CT , USA.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>f Department of Pediatrics , Yale School of Medicine , New Haven , CT </wicri:regionArea><placeName><region type="state">Connecticut</region></placeName></affiliation></author></analytic><series><title level="j">AIDS care</title><idno type="eISSN">1360-0451</idno><imprint><date when="2015" type="published">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">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.</div></front></TEI><affiliations><list><country><li>Ghana</li><li>États-Unis</li></country><region><li>Connecticut</li><li>Indiana</li></region></list><tree><country name="États-Unis"><region name="Indiana"><name sortKey="Catlin, Ann Christine" sort="Catlin, Ann Christine" uniqKey="Catlin A" first="Ann Christine" last="Catlin">Ann Christine Catlin</name></region><name sortKey="Cong, Xiangyu" sort="Cong, Xiangyu" uniqKey="Cong X" first="Xiangyu" last="Cong">Xiangyu Cong</name><name sortKey="Fernando, Sumudinie" sort="Fernando, Sumudinie" uniqKey="Fernando S" first="Sumudinie" last="Fernando">Sumudinie Fernando</name><name sortKey="Gamage, Ruwan" sort="Gamage, Ruwan" uniqKey="Gamage R" first="Ruwan" last="Gamage">Ruwan Gamage</name><name sortKey="Kyriakides, Tassos" sort="Kyriakides, Tassos" uniqKey="Kyriakides T" first="Tassos" last="Kyriakides">Tassos Kyriakides</name><name sortKey="Paintsil, Elijah" sort="Paintsil, Elijah" uniqKey="Paintsil E" first="Elijah" last="Paintsil">Elijah Paintsil</name><name sortKey="Reynolds, Nancy R" sort="Reynolds, Nancy R" uniqKey="Reynolds N" first="Nancy R" last="Reynolds">Nancy R. Reynolds</name></country><country name="Ghana"><noRegion><name sortKey="Renner, Lorna" sort="Renner, Lorna" uniqKey="Renner L" first="Lorna" last="Renner">Lorna Renner</name></noRegion><name sortKey="Amisah, Kofi Aikins" sort="Amisah, Kofi Aikins" uniqKey="Amisah K" first="Kofi Aikins" last="Amisah">Kofi Aikins Amisah</name><name sortKey="Antwi, Sampson" sort="Antwi, Sampson" uniqKey="Antwi S" first="Sampson" last="Antwi">Sampson Antwi</name><name sortKey="Tettey, Jonas Kusah" sort="Tettey, Jonas Kusah" uniqKey="Tettey J" first="Jonas Kusah" last="Tettey">Jonas Kusah Tettey</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
EXPLOR_STEP=$WICRI_ROOT/Wicri/Sante/explor/SidaGhanaV1/Data/Main/Exploration
HfdSelect -h $EXPLOR_STEP/biblio.hfd -nk 000274 | SxmlIndent | more
Ou
HfdSelect -h $EXPLOR_AREA/Data/Main/Exploration/biblio.hfd -nk 000274 | SxmlIndent | more
Pour mettre un lien sur cette page dans le réseau Wicri
{{Explor lien
|wiki= Wicri/Sante
|area= SidaGhanaV1
|flux= Main
|étape= Exploration
|type= RBID
|clé= pubmed:26616131
|texte= Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.
}}
Pour générer des pages wiki
HfdIndexSelect -h $EXPLOR_AREA/Data/Main/Exploration/RBID.i -Sk "pubmed:26616131" \
| HfdSelect -Kh $EXPLOR_AREA/Data/Main/Exploration/biblio.hfd \
| NlmPubMed2Wicri -a SidaGhanaV1
| This area was generated with Dilib version V0.6.31. |  |