Protocol for investigating data quality and reporting outcomes of pediatric gliomas in population-based cancer registry research

Raoull Hoogendijk; Jasper van der Lugt; Mariëtte E.G. Kranendonk; Gemma Gatta; Riccardo Capocaccia; Eelco W. Hoving; Pieter Wesseling; Otto Visser; Dannis G. van Vuurden; Henrike Karim-Kos

doi:10.1016/j.xpro.2024.102905

Protocol for investigating data quality and reporting outcomes of pediatric gliomas in population-based cancer registry research

Raoull Hoogendijk^*, Jasper van der Lugt, Mariëtte E.G. Kranendonk, Gemma Gatta, Riccardo Capocaccia, Eelco W. Hoving, Pieter Wesseling, Otto Visser, Dannis G. van Vuurden, Henrike Karim-Kos^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

Cancer registry data on pediatric gliomas come with inherent limitations as inclusion criteria and registration practices of these tumors differ between registries due to specific guidelines that are lacking. These limitations can lead to biased estimates in incidence and survival outcomes. Here, we present a protocol to investigate data quality and comparability for retrospective population-based pediatric glioma studies. We describe steps for obtaining institutional permissions, dealing with data quality issues, regrouping tumors, and reporting tumors in a clinically relevant manner. For complete details on the use and execution of this protocol, please refer to Hoogendijk et al.¹

Original language	English
Article number	102905
Journal	STAR protocols
Volume	5
Issue number	1
DOIs	https://doi.org/10.1016/j.xpro.2024.102905
Publication status	Published - 15 Mar 2024

Keywords

Cancer
Clinical Protocol
Health Sciences

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10.1016/j.xpro.2024.102905Licence: CC BY-NC-ND

1-s2.0-S2666166724000704-mainFinal published version, 2.62 MBLicence: CC BY-NC-ND

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Hoogendijk, R., van der Lugt, J., Kranendonk, M. E. G., Gatta, G., Capocaccia, R., Hoving, E. W., Wesseling, P., Visser, O., van Vuurden, D. G., & Karim-Kos, H. (2024). Protocol for investigating data quality and reporting outcomes of pediatric gliomas in population-based cancer registry research. STAR protocols, 5(1), Article 102905. https://doi.org/10.1016/j.xpro.2024.102905

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title = "Protocol for investigating data quality and reporting outcomes of pediatric gliomas in population-based cancer registry research",

abstract = "Cancer registry data on pediatric gliomas come with inherent limitations as inclusion criteria and registration practices of these tumors differ between registries due to specific guidelines that are lacking. These limitations can lead to biased estimates in incidence and survival outcomes. Here, we present a protocol to investigate data quality and comparability for retrospective population-based pediatric glioma studies. We describe steps for obtaining institutional permissions, dealing with data quality issues, regrouping tumors, and reporting tumors in a clinically relevant manner. For complete details on the use and execution of this protocol, please refer to Hoogendijk et al.1",

keywords = "Cancer, Clinical Protocol, Health Sciences",

author = "Raoull Hoogendijk and {van der Lugt}, Jasper and Kranendonk, {Mari{\"e}tte E.G.} and Gemma Gatta and Riccardo Capocaccia and Hoving, {Eelco W.} and Pieter Wesseling and Otto Visser and {van Vuurden}, {Dannis G.} and Henrike Karim-Kos",

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AU - Hoogendijk, Raoull

AU - van der Lugt, Jasper

AU - Kranendonk, Mariëtte E.G.

AU - Gatta, Gemma

AU - Capocaccia, Riccardo

AU - Hoving, Eelco W.

AU - Wesseling, Pieter

AU - Visser, Otto

AU - van Vuurden, Dannis G.

AU - Karim-Kos, Henrike

PY - 2024/3/15

Y1 - 2024/3/15

N2 - Cancer registry data on pediatric gliomas come with inherent limitations as inclusion criteria and registration practices of these tumors differ between registries due to specific guidelines that are lacking. These limitations can lead to biased estimates in incidence and survival outcomes. Here, we present a protocol to investigate data quality and comparability for retrospective population-based pediatric glioma studies. We describe steps for obtaining institutional permissions, dealing with data quality issues, regrouping tumors, and reporting tumors in a clinically relevant manner. For complete details on the use and execution of this protocol, please refer to Hoogendijk et al.1

AB - Cancer registry data on pediatric gliomas come with inherent limitations as inclusion criteria and registration practices of these tumors differ between registries due to specific guidelines that are lacking. These limitations can lead to biased estimates in incidence and survival outcomes. Here, we present a protocol to investigate data quality and comparability for retrospective population-based pediatric glioma studies. We describe steps for obtaining institutional permissions, dealing with data quality issues, regrouping tumors, and reporting tumors in a clinically relevant manner. For complete details on the use and execution of this protocol, please refer to Hoogendijk et al.1

KW - Cancer

KW - Clinical Protocol

KW - Health Sciences

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U2 - 10.1016/j.xpro.2024.102905

DO - 10.1016/j.xpro.2024.102905

M3 - Article

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AN - SCOPUS:85185803941

SN - 2666-1667

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JO - STAR protocols

JF - STAR protocols

IS - 1

M1 - 102905

ER -

Protocol for investigating data quality and reporting outcomes of pediatric gliomas in population-based cancer registry research

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Keywords

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