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Hydatidiform mole: validity of the registration in the Danish National Patient Registry, the Danish Cancer Registry, and the Danish Pathology Registry 1999–2009

Authors: Helle Lund; Mogens Vyberg; Helle Højmark Eriksen; Anni Grove; Annette Øestergaard Jensen; Lone Sunde;

Hydatidiform mole: validity of the registration in the Danish National Patient Registry, the Danish Cancer Registry, and the Danish Pathology Registry 1999–2009

Abstract

To examine the validity of registration of hydatidiform mole (HM) in the Danish National Patient Registry (NPR), the Danish Cancer Registry (DCR), and the Danish Pathology Registry (DPR).We selected women registered with a first-time HM code in NPR, DCR, and DPR from 1999 to 2009. We found most women registered in DPR. For a random sample of women registered in DPR, the coding was validated by comparing with the pathology report. Completeness and positive predictive value (PPV) of registration with an HM code in NPR and DCR were calculated using DPR as the reference. Details of women registered in NPR or DCR, but not in DPR, were scrutinized.In NPR and DPR, 1,520 women were identified in total; 1,057 (70%) were found in both registries, 65 (4%) only in NPR, and 398 (26%) only in DPR. In DCR and DPR, 1,498 women were identified in total; 1,174 (78%) in both registries, 47 (3%) only in DCR, and 277 (19%) only in DPR. For 149/150 randomly selected women registered with an HM code in DPR (99%), the pathology report was consistent with the diagnosis of HM. Completeness of NPR was 73% (95% CI: 70%-75%) and PPV was 94% (95% CI: 93%-95%). Completeness of DCR was 72% (95% CI: 69%-75%) in 1999-2003 and 90% (95% CI: 87%-92%) in 2004-2009. PPV of DCR was 96% (95% CI: 95%-97%) throughout the period.Validation of registry data is important before using these. For research on the number of HMs in Denmark, DPR is the most valid data source. NPR and DCR appear to be equally valid before 2004. However, for research after 2004, DCR should be preferred rather than NPR.

Country
Denmark
Keywords

Completeness, Positive predictive value, validity, Epidemiology, Infectious and parasitic diseases, RC109-216, DIAGNOSIS, Agreement, Partial hydatidiform mole, GESTATIONAL TROPHOBLASTIC DISEASE, EPIDEMIOLOGY, QUALITY, Clinical Epidemiology, ANCILLARY TECHNIQUES, Original Research, P57 IMMUNOHISTOCHEMISTRY, complete hydatidiform mole, TRENDS, PREGNANCY, completeness, Complete hydatidiform mole, positive predictive value, epidemiology, partial hydatidiform mole, agreement, SYSTEM

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    4
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Average
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
4
Average
Average
Average
Green
gold