Evidence map›Paper›PMID 33851061›Full record

ArticleContemporary clinical trials communications2021

Improving data quality in observational research studies: Report of the Cure Glomerulonephropathy (CureGN) network.

Brenda W Gillespie, Louis-Philippe Laurin, Dawn Zinsser, Richard Lafayette, Maddalena Marasa, Scott E Wenderfer, Suzanne Vento, Caroline Poulton, Laura Barisoni, Jarcy Zee and 13 more

Open access · goldAbstract read
In one paragraph

Article in Contemporary clinical trials communications, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
1.6field-weighted citation impact, top 18% of its field
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

9 citing papers in PubMed, 9 citations in OpenAlex.

  1. Article
  2. Review
  3. Proteinuria Trajectory and Disease Progression in Children and Adults with IgA Nephropathy/Vasculitis.Clinical journal of the American Society of Nephrology : CJASN · 2025
    Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. 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

23 authors at 13 institutions in 3 countries.

Brenda W GillespieDepartment of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI, 48109, USA.
Louis-Philippe LaurinDivision of Nephrology, Maisonneuve-Rosemont Hospital, Department of Medicine, University of Montreal, Montreal, Quebec, Canada.
Dawn ZinsserArbor Research Collaborative for Health, Ann Arbor, MI, 48104, USA.
Richard LafayetteStanford University Medical Center, Stanford, CA, 94305, USA.
Maddalena MarasaDepartment of Medicine, Division of Nephrology, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA.
Scott E WenderferPediatrics-Renal, Baylor College of Medicine, Houston, TX, USA.
Suzanne VentoNYU Langone Health, Department of Pediatrics, Division of Nephrology, New York, NY, USA.
Caroline PoultonKidney Center, Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Laura BarisoniDepartment of Pathology, Division of AI and Computational Pathology, Department of Medicine, Division of Nephrology, Duke University, Durham, NC, USA.
Jarcy ZeeArbor Research Collaborative for Health, Ann Arbor, MI, 48104, USA.
Margaret HelmuthArbor Research Collaborative for Health, Ann Arbor, MI, 48104, USA.
Francesca LuganiLaboratory of Molecular Nephrology, Istituto Giannina Gaslini, IRCCS, Genoa, Italy.
Margret KamelEmory University, Department of Pediatrics, Division of Nephrology, Atlanta, GA, USA.
Peg Hill-CallahanArbor Research Collaborative for Health, Ann Arbor, MI, 48104, USA.
Stephen M HewittLaboratory of Pathology, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.
Laura H MarianiUniversity of Michigan, Division of Nephrology, Ann Arbor, MI, USA.
William E SmoyerCenter for Clinical and Translational Research, the Research Institute at Nationwide Children's Hospital, The Ohio State University, Columbus, OH, USA.
Larry A GreenbaumEmory University and Children's Healthcare of Atlanta, Atlanta, GA, USA.
Debbie S GipsonUniversity of Michigan, Division of Nephrology, Department of Pediatrics, Ann Arbor, MI, USA.
Bruce M RobinsonArbor Research Collaborative for Health, Ann Arbor, MI, USA.
Ali G GharaviDepartment of Medicine, Division of Nephrology, Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA.
Lisa M Guay-WoodfordCenter for Translational Research, Children's National Hospital, Washington, DC, USA.
Howard TrachtmanNYU Langone Health, Department of Pediatrics, Division of Nephrology, New York, NY, USA.
Arbor Research Collaborative for Health · USUniversity of Michigan · USColumbia University · USEmory University · USBaylor College of Medicine · USChildren's National · USDuke University · USHôpital Maisonneuve-Rosemont · CAIstituto Giannina Gaslini · ITNational Institutes of Health · USNationwide Children's Hospital · USStanford Medicine · USUniversity of North Carolina at Chapel Hill · US

Funding

Experimental Pathology Laboratory (EPL)ZICBC011638 · NCI · DIVISION OF BASIC SCIENCES - NCI · PI HEWITT, STEPHEN · 2015 to 2025
$16.6M
The Columbia PCC for CureGN: the Cure Glomerulonephropathy networkU01DK100876 · NIDDK · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Andrew Stephen Bomback, ALI G GHARAVI · 2019 to 2026
$8.5M
CureGN-Penn PCCU01DK100846 · NIDDK · UNIVERSITY OF PENNSYLVANIA · PI LAWRENCE B. HOLZMAN · 2019 to 2026
$8.3M
Correcting Pathogenic TGF beta Activity in the AirwayR01HL144539 · NHLBI · UNIVERSITY OF VIRGINIA · PI SWIATECKA-URBAN, AGNIESZKA · 2019 to 2022
$1.7M
NHLBI NIH HHS R01 HL144539NIDDK NIH HHS U01 DK100846NIDDK NIH HHS U01 DK100876
6 · The paper itself

Abstract

backgroundHigh data quality is of crucial importance to the integrity of research projects. In the conduct of multi-center observational cohort studies with increasing types and quantities of data, maintaining data quality is challenging, with few published guidelines.

methodsThe Cure Glomerulonephropathy (CureGN) Network has established numerous quality control procedures to manage the 70 participating sites in the United States, Canada, and Europe. This effort is supported and guided by the activities of several committees, including Data Quality, Recruitment and Retention, and Central Review, that work in tandem with the Data Coordinating Center to monitor the study. We have implemented coordinator training and feedback channels, data queries of questionable or missing data, and developed performance metrics for recruitment, retention, visit completion, data entry, recording of patient-reported outcomes, collection, shipping and accessing of biological samples and pathology materials, and processing, cataloging and accessing genetic data and materials.

resultsWe describe the development of data queries and site Report Cards, and their use in monitoring and encouraging excellence in site performance. We demonstrate improvements in data quality and completeness over 4 years after implementing these activities. We describe quality initiatives addressing specific challenges in collecting and cataloging whole slide images and other kidney pathology data, and novel methods of data quality assessment.

conclusionsThis paper reports the CureGN experience in optimizing data quality and underscores the importance of general and study-specific data quality initiatives to maintain excellence in the research measures of a multi-center observational study.

Indexed as

Data qualityKidney diseaseObservational studiesQuality metricsSite performance

Identifiers

PMID33851061
PMCPMC8039553
OpenAlexW3132608056

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.