Evidence map›Paper›PMID 37644439›Full record

ArticleOrphanet journal of rare diseases2023

Overcoming challenges in rare disease registry integration using the semantic web - a clinical research perspective.

Karl Gisslander, Aladdin J Mohammad, Augusto Vaglio, Mark A Little

Abstract readLetter
PubMed Full text at PMC Publisher
In one paragraph

Article in Orphanet journal of rare diseases, 2023. 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

4 authors.

Karl GisslanderDepartment of Clinical Sciences - Rheumatology, Lund University, Lund, SE-221 85, Sweden. karl.gisslander@med.lu.se.ORCID http://orcid.org/0000-0003-1915-2656
Aladdin J MohammadDepartment of Clinical Sciences - Rheumatology, Lund University, Lund, SE-221 85, Sweden.
Augusto VaglioDepartment of Biomedical, Experimental and Clinical Sciences, University of Florence, Florence, Italy.
Mark A LittleTTMI, Trinity Health Kidney Centre, Dublin, Ireland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

The growing number of disease-specific patient registries for rare diseases has highlighted the need for registry interoperability and data linkage, leading to large-scale rare disease data integration projects using Semantic Web based solutions. These technologies may be difficult to grasp for rare disease experts, leading to limited involvement by domain expertise in the data integration process. Here, we propose a data integration framework starting from the perspective of the clinical researcher, allowing for purposeful rare disease registry integration driven by clinical research questions.

Indexed as

Rare DiseasesSemantic WebHumansRegistriesData integrationFAIRificationRare diseaseRegistrySemantic webVasculitis

Identifiers

PMID37644439
PMCPMC10466902

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.