Colorado Biobank Portal User Policies

Purpose

The Colorado Biobank Portal (CBP) is an online application and graphic user interface that allows exploration of summary statistics from Genome Wide Association Studies (GWAS) conducted using data from the biobank at the Colorado Center for Personalized Medicine (CCPM biobank). It does not require programming or bioinformatics experience and allows queries by gene, transcript, genomic region, variant, or phenotype. The database currently holds ~ 71 billion genetic association tests for 1605 clinical phenotypes and ~ 44.7 million variants.

Scope

Our access policies protect both the CCPM biobank’s intellectual property and the participants who have donated their information to the CCPM biobank. These policies control how access to information is granted and how such access is changed. By agreeing to these policies, the user agrees to abide by all stipulations set forth below whenever accessing CBP information in any format, and on any device.

These policies shall apply to all University of Colorado Anschutz Medical Campus schools, departments/divisions, centers, committees, employees and students within the university, as well as any contractual third parties and agents of the university with any form of access to the Colorado Biobank Portal and it’s related information systems.

Access

The CBP currently accepts applications from all University of Colorado – Anschutz Medical Campus faculty, staff, and students that have an interest in querying the GWAS data within the CCPM biobank. All users should have the intention to use the CBP application for research and/or operational purposes.

CBP has been created in part with data generated from the Regeneron Genetics Center (RGC). As per the terms of our partnership with RGC, we are required to provide them with 30 days notice for any abstract submissions or any manuscript submission, presentation, poster, grant applications that contain results, or any other scientific communication outside of the University of Colorado Anschutz Medical Campus. They may extend that delay up to 90 days if they identify a patentable aspect or something worth additional investigation. The requirement for disclosure specified in this document is limited to CCPM biobank data. Individuals with other RGC participants should seek separate approval from RGC. As part of the process related to CCPM biobank data, RGC may ask for language in the acknowledgments or specific authorship. If this arrangement is breached, CCPM reserves the right to retract data, notify RGC of the breach, and/or notify the journal, conference, granting agency, or other scientific entity that has received the original manuscript.

Usernames and Passwords

It is of utmost importance that the password remains protected. The following guidelines must be adhered to at all times:

• Change temporary password provided by CCPM Informatics Operations (IO) to your own as soon as you get it.
• Never reveal your passwords to anyone.
• Do not write your passwords down or store them where they are open to theft.
• Do not use any part of your username within the password.
• Do not use the same password for systems inside and outside of work.

User Responsibilities

The CBP user agrees to the following:

• The user must not share their login credentials with a non-authorized user or allow any non-authorized user to utilize an approved account. All users must have their own login credentials and receive approval for accessing CBP prior to using the application
• The user shall only use the application for research and/or operational purposes only. The user shall not utilize any data from the CBP for clinical use.
• Any data and/or findings obtained from the use of the CBP shall not be delivered to third-party entities, businesses, companies, or industry collaborators. Permitted uses include academic research including publication in peer reviewed journals and in grant applications.
• The user shall not collect data for the purpose of genome reconstruction and/or CCPM biobank participant re-identification.
• If publishable findings are discovered using the CBP, the following acknowledgement should be given to" “The Colorado Biobank Portal, created by the Informatics Operations unit of the Colorado Center for Personalized Medicine”.
• The CCPM biobank is moving to a banner authorship process for publications resulting from the use of CCPM resources, which will help provide academic credit to those who contribute without diluting individual or teams’ contributions while also reducing manuscript reporting requirements. The banner author process is designed to ensure that all contributors to the CCPM biobank are properly recognized in future publications. It is important to us that the efforts of everyone involved in the collection and maintenance of these valuable resources are acknowledged. If a manuscript or abstract includes CBP data, the name “Colorado Center for Personalized Medicine” should be included as a distinct author. Many journals will request that a banner (or block, consortium, or similar term) author be submitted in the form of a spreadsheet (see below for contact information to obtain the CCPM banner author spreadsheet).

Team

Frequently Asked Questions

For more information, please visit our FAQ page.