Some data from the GTEx project is openly available, meaning that it can be accessed directly through the Internet. However, in order to reduce risks of sharing potentially identifying data, some data elements are available to the scientific community only through a controlled-access system, NCBI’s dbGaP. Standard Operating Procedures (SOPs), data collection instruments, histopathological interpretations, molecular data that does not provide direct genetic variation information (e.g., expression arrays, summary sequence-based gene expression estimates stripped of variant information, eQTL results), laboratory processing variables (e.g., cDNA library preparation methods), and a very limited set of medical and socio-demographic variables (e.g., sex, age at death in intervals) will be openly available. The LDACC will host an open access data portal while specimen acquisition SOPs and associated data collection instruments will be available through caHUB. Other medical and social history information, molecular results that contain direct genetic variation information (e.g., SNP genotyping files, RNA-Seq reads) and summary results that allow accurate inference of allele frequencies18 will be available only through controlled access. Direct HIPAA identifiers, including dates that include month and day, will not be available through either open or controlled access.
