Evidence map›Paper›PMID 42261210›Full record

ArticleJournal of neuromuscular diseases2026

Advancing neuromuscular disease research through real-world data: Challenges and lessons learned.

Joseph S Munn, Eyal Cohen, Victoria Hodgkinson, Hanns Lochmüller, Homira Osman, Gordon Jewett, Reshma Amin

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of neuromuscular diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

7 authors.

Joseph S MunnDivision of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, The University of Toronto, Toronto, ON, Canada.ORCID 0000-0003-1018-917X
Eyal CohenICES, Toronto, ON, Canada.
Victoria HodgkinsonHotchkiss Brain Institute, University of Calgary, Calgary, AB, Canada.
Hanns LochmüllerChildren's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
Homira OsmanMuscular Dystrophy Canada, Toronto, ON, Canada.
Gordon JewettHotchkiss Brain Institute, University of Calgary, Calgary, AB, Canada.ORCID 0000-0002-8268-5677
Reshma AminDivision of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, The University of Toronto, Toronto, ON, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

There has been great interest in using diagnostic, procedural, and billing information collected in health administrative databases to study neuromuscular disease (NMDs), as these data are ideal for performing epidemiological and longitudinal research. However, NMDs can be difficult to identify using health administrative data alone and clinically significant information is often missing. Linking disease registries to health administrative data is an opportunity to overcome these limitations. This is especially relevant as the number and quality of NMD registries has improved dramatically in the last decade. This commentary draws on our experience performing multijurisdictional research linking the Canadian Neuromuscular Disease registry to health administrative databases across five Canadian provinces and will discuss the difficulties associated with performing this work.

Indexed as

health administrative datamultijurisdictional researchneuromuscular disease registriesreal-world data

Identifiers

PMID42261210
PMCPMC13438677

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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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.