Data Access Policy
The TARGET Initiative is producing large volumes of genomic data for the most prevalent pediatric cancers. To accelerate the discovery and improve clinical outcomes of these cancers, data generated by the TARGET Initiative are made broadly available to the research community. Because patient privacy protection is the highest priority to NCI and TARGET collaborators, human subjects’ protection and data access policies are implemented to ultimately protect the privacy and confidentiality of the research participants.
As such, genomic data generated from TARGET projects are available in two tiers:
Open-access tier: contains information that is deemed to present minimal risk of participant re-identification. Most of the TARGET data, excluding patient identifiers, are included in the open-access tier. This tier does not require user certification and allows researchers to explore data content without restriction.
The types of open-access data include:
- Clinical information that could not be used to identify the patient
- Tissue pathology data
- Gene expression data (other than 1º exon array data)
- Tumor-specific copy-number alterations and loss-of-heterozygosity
- Sequence data of single amplicons (matched tumor & normal when available; cannot be assembled to link to an individual)
- Tumor-associated mutations (somatic)
Controlled-access tier: contains broader demographic, clinical, and genotypic information as compared to the open-access data. Controlled-access data, while stripped of direct patient identifiers, are unique and 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 and both NCI and eRA commons user accounts. Click here for more information.
The types of controlled-access data include:
- Specific demographic and clinical data
- Genome-wide genotypes for each case
- Information linking all sequence traces to an individual
- Whole genome, exome or transcriptome sequences for an individual case