Detailed information on the CKB resource and the Data Access Policy and Procedures are provided elsewhere on this website.
The frequently asked questions and responses below provide summarised guidance on key aspects of common interest.
What data are available to external researchers?
All data collected at baseline is currently available to researchers from China, and will become available to the rest of the world in 2016. Additional datasets - including disease outcome data - will be made available in the future.
Can I access the samples?
Due to the limited quantity and depletable nature of samples, access to samples, but not to the data generated from them, is restricted. We welcome collaborations that propose an extensive range of quality-controlled assays of all - or large numbers of – samples (eg GWAS, metabolomics, proteomics).
Can I re-contact the participants?
Recontacting participants directly is not possible; no participant identifiable data will be released. CKB is undertaking periodic resurveys of a subset of surviving participants (the third one is scheduled for 2018), and it may be possible to include new measurements at that time at the discretion of the CKB study group.
Who is eligible to receive data?
Data is available to bona fide researchers with a track record of peer reviewed publication and working at an eligible academic institution, health service organisation or charitable research organisation.
How do I request a data set?
Data requestors are required to register via the CKB Data Access System. The first registration stage checks researcher credentials. Approved researchers will be able submit a data request by completing an online application form.
How will the quality of research proposals be judged?
Proposals will be initially assessed by the CKB study team. Approved projects will: have clearly defined objectives; include a sound methodology that is likely to generate meaningful results; be based on an appropriate and available selection of data; have clearly defined timelines and outputs (e.g. 1-2 papers in peer-reviewed journals).
My application was declined - can I appeal or resubmit?
All rejected applications are routinely referred to the CKB Independent Access Committee. Reasons for rejection are available on request and may include recommendations for any resubmission. Any dispute can be referred to the Independent Data Access Oversight Committee of the Nuffield Department of Population Health in Oxford or relevant committee at the CAMS in China.
How long will it take to receive the data?
A Data Access Workflow provides provides a breakdown of the relevant stages in the timeline. In general, the whole process from initial registration, formal application, review of proposal, approval, signing of Data Access Agreement, and release of the data may take up to 16 weeks in total.
Can I use the CKB data for my thesis?
Data requestors should already have a track record of peer reviewed publication in a relevant field. Moreover the data released should in general allow for assessment of specific questions that may lead to publication of 1-2 papers. It is likely therefore that the data made available may not be suitable for a major thesis. Students wishing to access the dataset will have to apply for access to data in conjunction with their supervisor.
Can I contact anyone to discuss an application?
Yes. In the first instance please send an e-mail with details or your enquiry and preferred contact details to email@example.com and firstname.lastname@example.org
How will competition between researchers be managed?
Each application will be considered on individual merit. To avoid duplication of effort, where there is substantial overlap between separate proposals we may suggest that researchers collaborate on a project (after seeking appropriate permissions). The CKB will not insist on collaboration; if proposals meet the criteria for approval the same data may be shared with different institutions at the same time. A list of approved and completed projects will be made available on this website to ensure that knowledge of the resource and its usage is freely available.
Why is data first released to researchers based in China?
All CKB participants were enrolled in China and CKB applications for funding and for Chinese government approval of the project emphasised ways to strengthen research capacity in China. Having a period of privileged-use for China based researchers is consistent with this approach.
How are the participant details protected?
Safeguards will be maintained to ensure the anonymity and confidentiality of participants’ data. Researchers must agree not to attempt to identify participants. The data provided to researchers will not contain any personally identifiable variables (i.e. data sets will be “anonymised” with uniquely encrypted participant identifiers (PIDs)).
How are my details protected?
Once approved, how will the data be delivered?
After signing the Data Access Agreement, the data and accompanying descriptive documentation will be generated in CSV Format and released using encrypted physical media or in a secure manner via the internet.
Is there an administration fee involved?
Data is freely available to applicants from mainland China and Hong Kong. Researchers based elsewhere in the world will incur an Access Charge of £750 (GBP) for each approved data request. This will contribute to the administrative costs incurred in managing and reviewing the application, and in preparing the individual datasets.
Do research papers / outputs need to be approved by the CKB?
No, authorship is up to the data requestor. The CKB should be acknowledged in accordance with the Data Access Agreement. We do ask to see copies of papers prior to publication. CKB study staff may be willing to assist with drafting papers with appropriate acknowledgement.
I have forgotten my Data Access System password, what do I do?
Please e-mail email@example.com from the e-mail account you registered with and you will be sent a replacement.
Can I delete uploaded documents or edit a submitted application?
Not at the moment. Please e-mail firstname.lastname@example.org with details of any change required.
Can I save, print or download my application?
No. However the Data Request and Researcher Registration forms are available as a Microsoft Word documents for those wishing to work on the application offline. All submitted applications are available by selecting “Previous Requests” under the “Data Requests” section of the Data Access System.