OCG Data Sharing & Access

DATA SHARING

An important component of NCI's Office of Cancer Genomics (OCG) is to make the results from OCG-related studies available to the cancer research community in an effort to accelerate innovations in drug discovery and lead to better cancer treatments. In its capacity as a data portal, OCG enables researchers to search, download, and analyze the data available for each cancer studied. These datasets contains clinical information, genomic characterization data, and high-throughput sequencing analysis of the tumor genomes.

DATA ACCESS

Because patient privacy protection is the highest priority and of utmost concern to NCI, OCG and its collaborators, human subjects protection and data access policies are practiced to protect the privacy and confidentiality of patient data. As a result, data generated from OCG programs are available in two tiers, open-access tier and controlled-access tier.

Open-Access Tier

The open-access data tier includes publicly accessible data that cannot be aggregated to generate a dataset unique to an individual. This tier does not require user certification and allows researchers open access.

The types of open-access data include:

• Tissue pathology data,
• Health Insurance Portability and Accountability Act of 1996 (HIPAA) de-identified clinical data,
• Gene expression data,
• Tumor-specific copy-number alterations and loss-of-heterozygosity, and
• Known tumor-associated mutations (somatic and germline).

Controlled-Access Tier

The controlled-access data tier contains broader demographic, clinical, and genotypic information than the open-access data. These controlled-access data, while stripped of direct patient identifiers, are unique and are invaluable for research projects (target identification and therapeutics development) for which the open-access data are not sufficient. Access to this tier requires user certification.

The types of controlled-access data include:

• Additional demographic and clinical data,
• Region-specific or genome-wide genotypes, and
• Information linking all sequence traces to a single participant.

To gain access to controlled-access tier data, investigators need to obtain specific permission by filling out the Data Access Request (controlled-access tier dataset instructions and form).