Data access for researchers

Primary Data

Most LABSS primary data (anonymised) will be shareable once the analysis has been completed but only if summary data is not sufficient for the proposed research.

Primary data from UK Biobank and the Scottish Colorectal Cancer Study cannot be shared through LABSS and specific approvals should be sought directly with the respective Access Committees.

Summary Data

Summary data will be shareable once the analysis has been completed and manuscript(s) have been accepted for publication in peer-reviewed journals.

Storage

Storage of data will adhere to CRUK policy on data storage and preservation. Data will be stored on dedicated servers, with back-up, and preserved for 10 years following project completion. Anonymised data selected for publication will also be available for 10 years for other researchers to use.

Data access, sharing and collaboration

Re-use

Data generated in the lifetime of the project will be properly curated and stored with the relevant high quality metadata. Coding and annotation of all variables will be standardized across the cohorts as far as possible, and an overall mapping of relationships between variables will be constructed.  Where possible, data will be stored in the simplest, non-proprietary formats (comma separated, text based - not dependent on the software of specific sellers).

Restrictions on Data Sharing

Researchers and their Institutions will not be able to link the shared data with other datasets as they will not get identifiable data. They will also be contracted not to make any attempt to link the data to other datasets held by different recipients or by the same Recipient Institution for different projects, without specific approval and agreement from the project’s Access Committee. Each future project should conform to the consent and ethical approvals obtained, the participating cohorts should not be brought into disrepute and participant confidentiality should be respected at all times.

LABSS Datasets for other researchers

A description of the project strategy and outputs will be posted on the CRUK website. Metadata and summary information will be available through a password-protected data portal. The data will be publicised at relevant conferences and symposia to increase awareness of its existence to academic and commercial organisations.

Data sharing

Data sharing will be possible via a detailed Access Process, in compliance with CRUK policy for timely sharing without unnecessary restrictions. Access Process plans will be submitted for ethical review and revised when required. The decision on whether to link LABSS data to existing data for a potential new user will be made by the Principal Investigator after consulting the Access Committee of each individual study.