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 · 2026
Read Repurposing Registries: Completeness of Real‐World Data for Regulatory and HTA Purposes in Three Cancer‐Focused Registries by Manon C. Wilpshaar, Doranne Hilarius, Luisa Prada, Ansgar Weltermann, Christine Leopold (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/PMC13339414.txt.
Description
Manon C. Wilpshaar and colleagues check whether cancer registries hold data fit for policy use in a 2026 study. Registries built for clinical care are now asked to serve drug approval and value judgments. Three European cancer registries with different aims were audited.
A reference list of essential data items was built from literature and expert input. All three registries lacked parts of comorbidity, added therapy, patient-reported, cost, and safety data as reported. Inclusion rules differed sharply by original purpose. The authors urge disease-specific core datasets so registry owners can benchmark and close gaps before policy reliance grows.
Catalog record
| CREATOR | Manon C. Wilpshaar, Doranne Hilarius, Luisa Prada, Ansgar Weltermann, Christine Leopold |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 48623 |
| LICENSE | https://creativecommons.org/licenses/by/4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |