Evidence map›Paper›PMID 42016069›Full record

ArticleClinical epidemiology2026

Validity of The Danish National Chronic Myeloid Neoplasia Registry.

Dustin Andersen Patel, Karina Kannik, Iman Chanchiri, Peter de Nully Brown, Anne Stidsholt Roug, Kirsten Grønbæk, Marie Bak, Tarec Christoffer El-Galaly, Christen Lykkegaard Andersen

Abstract read
In one paragraph

Article in Clinical epidemiology, 2026. 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

9 authors.

Dustin Andersen PatelSection of General Practice and Research Unit for General Practice, Department of Public Health, University of Copenhagen, Copenhagen, Denmark.ORCID 0000-0003-3996-0431
Karina KannikDepartment of Hematology, Aalborg University Hospital, Aalborg, Denmark.
Iman ChanchiriDepartment of Hematology, Odense University Hospital, Odense, Denmark.
Peter de Nully BrownDepartment of Hematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Anne Stidsholt RougDepartment of Hematology, Aarhus University Hospital, Aarhus, Denmark.ORCID 0000-0003-2621-5432
Kirsten GrønbækDepartment of Hematology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
Marie BakDepartment of Haematology, Zealand University Hospital, Roskilde, Denmark.ORCID 0000-0002-1511-6749
Tarec Christoffer El-Galaly *Department of Hematology, Aarhus University Hospital, Aarhus, Denmark.
Christen Lykkegaard Andersen *Section of General Practice and Research Unit for General Practice, Department of Public Health, University of Copenhagen, Copenhagen, Denmark.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Purpose: Myeloproliferative neoplasms (MPN) are rare hematological malignancies with long survival, making real-world evidence essential to complement clinical trial data. The Danish National Chronic Myeloid Neoplasia Registry (DMR) captures nearly all MPN patients nationwide, but its validity has not been systematically evaluated. We aimed to validate key clinical variables in the DMR through a nationwide audit. Methods: We sampled DMR entries from 372 persons registered with essential thrombocythemia (ET), polycythemia vera (PV), primary myelofibrosis (PMF), prefibrotic myelofibrosis (preMF), or unclassifiable MPN (MPN-U) between 2017 and 2021 across all regions of Denmark. We validated eight main variables, including 27 subordinate variables of clinical importance from the DMR, against electronic health records using standardized audit procedures. Positive predictive value (PPV), negative predictive value (NPV), sensitivity, specificity, and accuracy were calculated. Results: Overall, the DMR showed mostly high PPV and intermediate/high NPV values. PPV was high for core diagnostic, treatment and comorbidity variables: ET (0.91), PV (0.95) and PMF (0.97), date of diagnosis (0.97), splenomegaly (0.98), Conclusion: The DMR demonstrates high validity for several clinically relevant variables and constitutes a reliable source of real-world data in MPN research and therefore, crosslinking registry variables with other data sources may enable robust epidemiological studies and unprecedented precision in real-world evidence for MPN patients. Nevertheless, variable documentation and data quality must be critically assessed to account for changes in data entry practices across time periods.

Indexed as

data accuracyEpidemiologymedical record linkagemyeloproliferative disorders/epidemiologyreal-world evidenceregistries/standards

Identifiers

PMID42016069
PMCPMC13092446

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Registered trials

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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.