Evidence map›Paper›PMID 40898230›Full record

ArticlePediatric rheumatology online journal2025

A roadmap for navigating child health research data sharing across Canada and beyond - building on UCAN CAN-DU.

Brittany Gerber, Gillian R Currie, Alexander Mosoiu, Alexander Bernier, Francois P Bernier, Kym M Boycott, Guillermo Fiebelkorn, Kristien Hens, Bartha M Knoppers, Claire LeBlanc and 7 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric rheumatology online journal, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

17 authors.

Brittany GerberDepartment of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
Gillian R CurrieDepartment of Community Health Sciences, University of Calgary, Calgary, AB, Canada. currie@ucalgary.ca.ORCID http://orcid.org/0000-0002-4681-9893
Alexander MosoiuThe Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Alexander BernierCentre of Genomics and Policy, Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada.
Francois P BernierAlberta Children's Hospital Research Institute, University of Calgary, Calgary, AB, Canada.
Kym M BoycottDepartment of Genetics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Guillermo FiebelkornCumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Kristien HensDepartment of Philosophy, University of Antwerp, Antwerp, Belgium.
Bartha M KnoppersCentre of Genomics and Policy, Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada.
Claire LeBlancDepartment of Pediatrics, Faculty of Medicine, McGill University, Montreal, QC, Canada.
Stephen W SchererThe Centre for Applied Genomics, The Hospital for Sick Children, Toronto, ON, Canada.
David ShawInstitute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Chris VineyLegal Services , The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Carl VirtanenHPC4Health, University Health Network, Toronto, ON, Canada.
Susanne M Benseler *Department of Pediatrics, University of Calgary, Calgary, AB, Canada.
Rae S M Yeung *Departments of Pediatrics, Immunology and Medical Science, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
Deborah A Marshall *Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.

Funding

CIHR 174942
6 · The paper itself

Abstract

backgroundSharing health data within and across jurisdictions is important for research and improving healthcare quality; however, researchers, governments and funders must balance the benefits of data sharing with data privacy. Though frameworks exist to guide data sharing it can be difficult to translate these into practice. Therefore, our aim was to create a practical example of data sharing for researchers in pediatric rheumatology.

methodsWe utilized expert consultation with leaders in child health, genomics, rheumatology, bioethics, privacy and records, bioinformatics, and legal counsel to better understand barriers and enablers for sharing of health data. We used these barriers to frame the learnings of UCAN CAN-DU (Understanding Childhood Arthritis Network Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases) which is a collaboration that collects and shares phenotypic, genomic, health economic and patient reported data across centers in Canada and the Netherlands in order to provide a real-life, practical example of data sharing across borders in pediatric rheumatology.

resultsBarriers to data sharing include lack of standardized consent, ethics review processes for multi-site projects, developing data governance frameworks aligned with institutional and regulatory requirements, differing data standards and a lack of interoperability, and managing data access. UCAN CAN-DU provides lessons for navigating these barriers through standardized consent forms, centralized ethics review and reciprocity agreements; building a network to support data interoperability and harmonization of procedures; documentation to support data sharing, including legal agreements, utilization of a secure healthcare data storage compute facility, and a data access advisory committee with clear policies for secondary data use.

conclusionWe have shared how UCAN CAN-DU navigated barriers to data sharing, providing an example of data sharing for researchers in pediatric rheumatology. This work highlights the importance of research networks in establishing interoperability including minimal data sets, standard operating procedures, and institutional legal/contracts partnerships that ultimately support data sharing. The barriers and enablers presented are broadly applicable across countries and provide direction on areas for future research and initiatives to foster data sharing.

Indexed as

Biomedical ResearchChild HealthInformation DisseminationRheumatologyCanadaChildConfidentialityHumansPediatricsChildhood arthritisData governanceData managementData privacyData sharing and accessEthicsGenomics and multi-omicsHealth economicsHealth services researchPatient reported outcomes

Identifiers

PMID40898230
PMCPMC12403251

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.