Evidence map›Paper›PMID 42337928›Full record

ArticleClinical pharmacology and therapeutics2026

Repurposing Registries: Completeness of Real-World Data for Regulatory and HTA Purposes in Three Cancer-Focused Registries.

Manon C Wilpshaar, Doranne Hilarius, Luisa Prada, Ansgar Weltermann, Christine Leopold

Abstract read
In one paragraph

Article in Clinical pharmacology and therapeutics, 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

5 authors.

Manon C WilpshaarDutch Medication Audit, Dutch Institute for Clinical Auditing (DICA), Leiden, The Netherlands.
Doranne HilariusDutch Medication Audit, Dutch Institute for Clinical Auditing (DICA), Leiden, The Netherlands.
Luisa PradaClinical Research Unit, Research Center of IPO Porto (CI-IPOP)/CI-IPOP@RISE (Health Research Network), Portuguese Oncology Institute of Porto (IPO Porto)/Porto Comprehensive Cancer Center Raquel Seruca (Porto.CCC Raquel Seruca), Porto, Portugal.
Ansgar WeltermannTumorzentrum Oberösterreich (Cancer Center Upper Austria), Austria.
Christine LeopoldDivision of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences (UIPS), Utrecht University, Utrecht, The Netherlands.ORCID 0000-0002-2046-8490

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Despite developments in supporting the identification and selection of fit-for-purpose registries, a translational gap remains between the original purposes of clinically focused registries and their current and future expected use in policymaking. This study aimed to assess the extent to which cancer-focused registries collect essential data elements for regulatory and Health Technology Assessment (HTA) processes. Using literature and expert input, a reference dataset of essential data elements was developed. Completeness of data elements in this reference dataset was evaluated on the example of three European, cancer-focused registries, varying in type, coverage, and health system: the Cancer Centre Upper Austria (CCUA) registry, the Dutch Medication Audit (DMA), and the Portuguese Oncology Institute of Porto (RIC IPO Porto) registry. The evaluated registries exhibit clear differences in inclusion criteria driven by their specific aims. Data elements related to comorbidities, concomitant therapies, patient-reported outcome measures (PROMs), resource use, and safety outcomes were lacking partly or completely in all evaluated registries, highlighting the importance of developing disease-specific core datasets to which registry holders can benchmark their data collection. This study also highlights that the initial aims and design of registries impact their strengths and weaknesses in supporting regulatory and HTA decision-making. Optimally repurposing registry data requires capacity building for registry holders and regulatory/HTA stakeholders focusing on mutual understanding of aims, needs, and limitations. Additional research should address data interoperability, standardization, and data quality across registries.

Indexed as

NeoplasmsRegistriesTechnology Assessment, BiomedicalAustriaHumansNetherlandsPortugal

Identifiers

PMID42337928
PMCPMC13339414

What Socratic holds

Textmetadata
LicenceCC BY-NC-ND
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 Socratic graph.