Data Access Procedures

This page provides an overview of the key stages in the CKB Data Access Procedures and the CKB Data Access System that are used to register individual data requests. A Data Access Workflow provides a visual guide to the relevant stages and associated timelines.

Preparation

All interested researchers are advised to read the Data Access Policy and Data Overview pages of this website to gain an understanding of the resources available. The Frequently Asked Questions page provides further useful information.

CKB Data Access System

The CKB Data Access System is a secure online portal that allows researcher to 1) register to use the resource and 2) complete project proposals and data requests. All data supplied is treated as confidential and in accordance with the CKB Privacy Policy. Microsoft Word and PDF versions of the registration (Word, PDF) and data request forms (Word, PDF). The system accepts Chinese script.

Researcher Registration

The Data Access System is accessed via the Login – Register page on the CKB website. New users are required to pre-register their e-mail address and choose a password. Select the ‘Register’ option and follow the on-screen instructions. Where possible you should register with your institutional e-mail address. You will be e-mailed a link which will enable you to complete the registration process. Details of the required information are provided on the relevant form. Mandatory Fields are marked with a *. A Microsoft Word version of the Researcher Registration Form is  provided for review purposes and offline use. The CKB Access Team aim to respond to registration requests within 2 weeks.

Submission of a Data Request

Once your researcher registration is approved, you will be able to login to the system and access the Data Requests section. Selecting the ‘New Request’ option under the ‘Data Requests’ menu gives access to the CKB Data Request Form. Details of the required information are provided on the form. Applicants should also refer to the Baseline Questionnaire, tables of baseline characteristics are provided in this article.  A Microsoft Word version of the Data Request Form is provided for review purposes and offline use. The CKB Access Team aim to review and respond to Data Requests within 4-6 weeks.

Review Process

Proposals will be reviewed and assessed by the CKB Access Team to check for completeness. The CKB Senior Management Group will review applications at regular meetings. In general, approved projects should have met the following criteria:

  • have clearly defined objectives,
  • have a sound methodology that is likely to generate meaningful results;
  • be based on an appropriate and available selection of data; and
  • have clearly defined timelines and outputs (e.g. 1-2 papers in peer-reviewed journals).

The host organisation’s capacity to cover the research costs; to securely hold the data; and to comply with the terms of the resulting Data Access Agreement will also be considered. Where in house expertise is insufficient, proposals may be sent to external reviewers. If necessary, data requestors may be contacted by e-mail and asked to provide further information in support of their application. All recommendations to decline access requests will be referred to the CKB Independent Access Committee.

Access Agreement and Charges

Before any data is released, a signed Data Access Agreement is required and (where applied) Access Charges must be paid. For applications outside of China the agreements will be between the University of Oxford and the data requestor’s institution. Within China a similar contractual agreement will be made between the researcher’s institution and the Chinese Academy of Medical Sciences. A Template Data Access Agreement is available for review. It is anticipated that completion of the Data Access Agreement and associated invoicing and payment will take 4-6 weeks.

Data Delivery

Once the Data Access Agreement becomes effective 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. Depending on its complexity preparation of the dataset will take from 1-2 weeks.

Publicity and Project Monitoring

Once a project becomes active, the CKB will publish a summary of the project on its website. In line with the terms of the Data Access Agreement, the CKB Access Team will also request regular progress reports and expects to be informed of any resulting publications. On completion of the project, it is a requirement that any derived datasets be returned for incorporating or archiving; any shared data also needs to be deleted (or otherwise destroyed) or returned to the CKB.