Evidence map›Paper›PMID 37943585›Full record

ArticleJMIR medical informatics2023

The Journey of Data Within a Global Data Sharing Initiative: A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research.

Ashkan Pirmani, Edward De Brouwer, Lotte Geys, Tina Parciak, Yves Moreau, Liesbet M Peeters

Open access · goldAbstract read
In one paragraph

Article in JMIR medical informatics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
2.3field-weighted citation impact, top 12% 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

5 citing papers in PubMed, 8 citations in OpenAlex.

  1. Review
  2. Article
  3. Article
  4. The refined Pathways to Cures Research Roadmap for multiple sclerosis cures.Multiple sclerosis (Houndmills, Basingstoke, England) · 2024
    Article
  5. 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

6 authors at 2 institutions in 1 country.

Ashkan PirmaniESAT, STADIUS, KU Leuven, Leuven, Belgium.ORCID https://orcid.org/0000-0003-4549-1002
Edward De BrouwerESAT, STADIUS, KU Leuven, Leuven, Belgium.ORCID https://orcid.org/0000-0003-0608-0155
Lotte GeysBiomedical Research Institute, Hasselt University, Diepenbeek, Belgium.ORCID https://orcid.org/0000-0003-1919-9366
Tina ParciakBiomedical Research Institute, Hasselt University, Diepenbeek, Belgium.ORCID https://orcid.org/0000-0002-1989-3641
Yves Moreau *ESAT, STADIUS, KU Leuven, Leuven, Belgium.ORCID https://orcid.org/0000-0002-4647-6560
Liesbet M Peeters *Biomedical Research Institute, Hasselt University, Diepenbeek, Belgium.ORCID https://orcid.org/0000-0002-6066-3899
Hasselt University · BEKU Leuven · BE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundInvestigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles impair data integration, standardization, and analysis, which negatively impact the generation of significant meaningful clinical evidence.

objectiveThis study aims to present a comprehensive, research question-agnostic, multistakeholder-driven end-to-end data analysis pipeline that accommodates 3 prevalent data-sharing streams: individual data sharing, core data set sharing, and federated model sharing.

methodsA demand-driven methodology is employed for standardization, followed by 3 streams of data acquisition, a data quality enhancement process, a data integration procedure, and a concluding analysis stage to fulfill real-world data-sharing requirements. This pipeline's effectiveness was demonstrated through its successful implementation in the COVID-19 and multiple sclerosis global data sharing initiative.

resultsThe global data sharing initiative yielded multiple scientific publications and provided extensive worldwide guidance for the community with multiple sclerosis. The pipeline facilitated gathering pertinent data from various sources, accommodating distinct sharing streams and assimilating them into a unified data set for subsequent statistical analysis or secure data examination. This pipeline contributed to the assembly of the largest data set of people with multiple sclerosis infected with COVID-19.

conclusionsThe proposed data analysis pipeline exemplifies the potential of global stakeholder collaboration and underlines the significance of evidence-based decision-making. It serves as a paradigm for how data sharing initiatives can propel advancements in health care, emphasizing its adaptability and capacity to address diverse research inquiries.

Indexed as

braindata analysisdata analysis pipelinedata sciencedata sharingend-to-end pipelineevidence-based decision-makingfederatedfederated model sharinglow prevalencemultiple sclerosisneurologyneurosciencepipelinerarereal-world dataspinal nervous systemspine

Identifiers

PMID37943585
PMCPMC10667980
OpenAlexW4388525483

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.