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Ensuring quality in studies linking cancer registries and biobanks

Langseth, Hilde; Luostarinen, Tapio; Bray, Freddie and Dillner, Joakim LU (2010) In Acta Oncologica 49(3). p.368-377
Abstract
The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from... (More)
The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Acta Oncologica
volume
49
issue
3
pages
368 - 377
publisher
Taylor & Francis
external identifiers
  • wos:000276657000013
  • scopus:77951272602
ISSN
1651-226X
DOI
10.3109/02841860903447069
language
English
LU publication?
yes
id
d86e8a2c-b8bd-4db9-9304-c5adab7a486d (old id 1603360)
date added to LUP
2010-05-19 09:00:59
date last changed
2018-05-29 11:05:05
@article{d86e8a2c-b8bd-4db9-9304-c5adab7a486d,
  abstract     = {The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes.},
  author       = {Langseth, Hilde and Luostarinen, Tapio and Bray, Freddie and Dillner, Joakim},
  issn         = {1651-226X},
  language     = {eng},
  number       = {3},
  pages        = {368--377},
  publisher    = {Taylor & Francis},
  series       = {Acta Oncologica},
  title        = {Ensuring quality in studies linking cancer registries and biobanks},
  url          = {http://dx.doi.org/10.3109/02841860903447069},
  volume       = {49},
  year         = {2010},
}