Evidence map›Paper›PMID 41342956›Full record

ArticleJournal of cancer research and clinical oncology2025

Concept and feasibility of privacy-preserving record linkage of cancer registry data and claims data in Germany: results from the DigiNet study on stage IV non-small cell lung cancer.

Anika Kästner, Christopher Hampf, Pia Naumann, Lizon Fiedler-Lacombe, Anna Kron, Anna Spier, Dusan Simic, Leonie Eilers, Aleksandra Graw, Sebastian Bartholomäus and 22 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of cancer research and clinical oncology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. [The North Rhine-Westphalia State Cancer Registry-a historical review from 1974-2025].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2026
    Review
  2. 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

32 authors.

Anika Kästner *Institute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald, Ellernholzstraße 1-2, 17487, Greifswald, Germany. anika.kaestner@med.uni-greifswald.de.
Christopher Hampf *Institute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald, Ellernholzstraße 1-2, 17487, Greifswald, Germany.
Pia NaumannUniversity Medicine Greifswald - Independent Trusted Third Party, Greifswald, Germany.
Lizon Fiedler-LacombeUniversity Medicine Greifswald - Independent Trusted Third Party, Greifswald, Germany.
Anna KronNational Network Genomic Medicine Lung Cancer, University Hospital of Cologne, Cologne, Germany.
Anna SpierInstitute of Health Economics and Clinical Epidemiology, Faculty of Medicine, University of Cologne, University Hospital of Cologne, Cologne, Germany.
Dusan SimicInstitute of Health Economics and Clinical Epidemiology, Faculty of Medicine, University of Cologne, University Hospital of Cologne, Cologne, Germany.
Leonie EilersFOM University of Applied Sciences, Essen, Germany.
Aleksandra GrawCancer Registry North-Rhine Westphalia, Bochum, Germany.
Sebastian BartholomäusCancer Registry North-Rhine Westphalia, Bochum, Germany.
Andreas StangCancer Registry North-Rhine Westphalia, Bochum, Germany.
Daniela ReilClinical-Epidemiological Cancer Registry Brandenburg-Berlin, Cottbus, Germany.
Renate Kirschner-SchwabeClinical-Epidemiological Cancer Registry Brandenburg-Berlin, Cottbus, Germany.
Jessica Isabel SeligCancer Registry Saxony, Dresden, Germany.
Jörg WulffCancer Registry Saxony, Dresden, Germany.
Patrik DrögeAOK Research Institute, Berlin, Germany.
Thomas RuhnkeAOK Research Institute, Berlin, Germany.
Christian GünsterAOK Research Institute, Berlin, Germany.
Uwe NußbaumBARMER, Wuppertal, Germany.
Ursula MarschallBARMER, Wuppertal, Germany.
Juliane MohnkeIKK classic, Dresden, Germany.
Anja HebbelmannMobil Krankenkasse, Hamburg, Germany.
Uwe LührigNational Network Genomic Medicine Lung Cancer, University Hospital of Cologne, Cologne, Germany.
Anna RasokatNational Network Genomic Medicine Lung Cancer, University Hospital of Cologne, Cologne, Germany.
Vanessa MildenbergerInstitute of Health Economics and Clinical Epidemiology, Faculty of Medicine, University of Cologne, University Hospital of Cologne, Cologne, Germany.
Stephanie StockInstitute of Health Economics and Clinical Epidemiology, Faculty of Medicine, University of Cologne, University Hospital of Cologne, Cologne, Germany.
Florian KronFOM University of Applied Sciences, Essen, Germany.
Jürgen WolfNational Network Genomic Medicine Lung Cancer, University Hospital of Cologne, Cologne, Germany.
Martin BialkeInstitute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald, Ellernholzstraße 1-2, 17487, Greifswald, Germany.
Dana StahlUniversity Medicine Greifswald - Independent Trusted Third Party, Greifswald, Germany.
Neeltje van den BergInstitute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald, Ellernholzstraße 1-2, 17487, Greifswald, Germany.
Wolfgang HoffmannInstitute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald, Ellernholzstraße 1-2, 17487, Greifswald, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveWhile cancer registry and health insurance data are valuable resources for oncological health services research, these are rarely linked at the individual level due to data protection concerns and technical limitations. The prospective, controlled cohort study DigiNet aims to optimize personalized care for patients with stage IV non-small cell lung cancer (NSCLC) in the German study regions Berlin, Saxony and North Rhine-Westphalia. The population-based control group (pCG) was identified through cohort matching within the participating cancer registries. For health economic analyses, case-specific linkage of cancer registry data with claims data without informed consent was required.

methodsA privacy-preserving record linkage (PPRL) concept was developed, ensuring that no conclusions about individual identities can be drawn. The approach relied on irreversible encryption of the statutory health insurance number (KVNR) within the data-holding institutions, using a study-specific configuration of a publicly available software.

resultsFollowing cohort matching in the cancer registries, N = 9,597 pCG cases with stage IV NSCLC diagnosis between June 2022 and March 2024 were identified. Of these, n = 1,437 (15.0%) had insurance coverage with one of three participating statutory health insurance funds and were eligible for PPRL. Among those, 94.2% (N = 1,354) were successfully linked with claims data. A trusted third party performed the linkage based on encrypted identifiers, removed the linkage keys, and provided the data to the evaluating parties.

conclusionsThis study demonstrates the feasibility of PPRL of cancer registry and claims data in a real-world oncological research setting. The concept is transferable to other research contexts requiring secure, identifier-based linkage without disclosure of personal identifiers.

Indexed as

Carcinoma, Non-Small-Cell LungLung NeoplasmsMedical Record LinkageRegistriesAgedFeasibility StudiesFemaleGermanyHumansMaleMiddle AgedNeoplasm StagingProspective StudiesCancer registryClaims dataExact linkageHealth insuranceRecord linkage

Identifiers

PMID41342956
PMCPMC12678689

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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.