Evidence map›Paper›PMID 36508412›Full record

ArticlePloS one2022

CureSCi Metadata Catalog-Making sickle cell studies findable.

Huaqin Pan, Cataia Ives, Meisha Mandal, Ying Qin, Tabitha Hendershot, Jen Popovic, Donald Brambilla, Jeran Stratford, Marsha Treadwell, Xin Wu and 1 more

Abstract read
In one paragraph

Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Huaqin PanRTI International, Research Triangle Park, Durham, NC, United States of America.
Cataia IvesRTI International, Research Triangle Park, Durham, NC, United States of America.
Meisha MandalRTI International, Research Triangle Park, Durham, NC, United States of America.
Ying QinRTI International, Research Triangle Park, Durham, NC, United States of America.
Tabitha HendershotRTI International, Research Triangle Park, Durham, NC, United States of America.
Jen PopovicRTI International, Research Triangle Park, Durham, NC, United States of America.ORCID 0000-0001-6699-2549
Donald BrambillaRTI International, Research Triangle Park, Durham, NC, United States of America.
Jeran StratfordRTI International, Research Triangle Park, Durham, NC, United States of America.
Marsha TreadwellChildren's Hospital & Research Center Oakland, Oakland, CA, United States of America.ORCID 0000-0003-0521-1846
Xin WuRTI International, Research Triangle Park, Durham, NC, United States of America.
Barbara KronerRTI International, Research Triangle Park, Durham, NC, United States of America.

Funding

Data Strategy Consortium for the NHLBI Cure Sickle Cell InitiativeOT3HL147798 · NHLBI · RESEARCH TRIANGLE INSTITUTE · PI KRONER, BARBARA L · 2018 to 2025
$18.2M
NHLBI NIH HHS OT3 HL147798
6 · The paper itself

Abstract

objectivesTo adopt the FAIR principles (Findable, Accessible, Interoperable, Reusable) to enhance data sharing, the Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) was developed to make Sickle Cell Disease (SCD) study datasets more Findable by curating study metadata and making them available through an open-access web portal.

methodsStudy metadata, including study protocol, data collection forms, and data dictionaries, describe information about study patient-level data. We curated key metadata of 16 SCD studies in a three-tiered conceptual framework of category, subcategory, and data element using ontologies and controlled vocabularies to organize the study variables. We developed the CureSCi MDC by indexing study metadata to enable effective browse and search capabilities at three levels: study, Patient-Reported Outcome (PRO) Measures, and data element levels.

resultsThe CureSCi MDC offers several browse and search tools to discover studies by study level, PRO Measures, and data elements. The "Browse Studies," "Browse Studies by PRO Measures," and "Browse Studies by Data Elements" tools allow users to identify studies through pre-defined conceptual categories. "Search by Keyword" and "Search Data Element by Concept Category" can be used separately or in combination to provide more granularity to refine the search results. This resource helps investigators find information about specific data elements across studies using public browsing/search tools, before going through data request procedures to access controlled datasets. The MDC makes SCD studies more Findable through browsing/searching study information, PRO Measures, and data elements, aiding in the reuse of existing SCD data.

Indexed as

Anemia, Sickle CellMetadataHumansInformation Dissemination

Identifiers

PMID36508412
PMCPMC9744304

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.