The NNTC clinical sites collect information on HIV disease severity, CNS and PNS signs and symptoms, comorbid conditions, laboratory values for a range of medical, immunological, and virological parameters, and tissue pathological diagnoses. Samples of plasma and CSF are collected from the participants followed longitudinally, and brain and other vital organs are obtained after death. The DCC of the NNTC is located at the University of Nebraska Medical Center in Omaha, NE, with an additional contractor, the Emmes Corporation, located in Rockville, MD, tasked with providing specimen request and central data management functions. The DCC provides these and other support activities for the four clinical sites (University of California San Diego, University of California Los Angeles, University of Texas Medical Branch at Galveston, and Icahn School of Medicine at Mt. Sinai New York, NY). The DCC maintains a centralized database containing clinical data and specimen information, including a public web presence, maintains quality assurance processes, and operates a secure web-access information for the sites and an internal communications platform. In addition data obtained by outside users of the NNTC (those that request specimens for research) transmit the data obtained to the DCC, which works with the investigators to properly curate and annotate the data and deposit it to an experimental database. In this manner NNTC validated data, along with the protocols on how data were obtained, as well as investigator-generated data, again along with the information on how data were obtained, can be made available to scientists in the research community, in addition to the specimens from the NNTC subjects. While the data are maintained centrally, the specimens reside at the four clinical sites, with an inventory maintained centrally in the DCC.
While the NNTC, by its nature as a brain bank, largely enrolls subjects with advanced disease or a risk of death from other conditions, the CHARTER study represents a broader range of participants. The CHARTER study was led by the University of California San Diego, with five additional sites participating (Johns Hopkins University, Baltimore MD, Icahn School of Medicine at Mount Sinai, New York City, NY, University of Texas Medical Branch, Galveston, University of Washington, Seattle, and Washington University, St. Louis, MO. Three of these sites are also NNTC sites. With the transition of the CHARTER study to an R01 mechanism in 2015, the data repository and responsibility for data and was transferred to the NNTC DCC, with the specimen repository sited at UCSD. Similar to the NNTC, the DCC is now collecting the experimental data from users of the CHARTER specimens, annotating and curating for use by scientists in the field.
With the creation of this portal it our aim to encourage collaboration as a means to better understand CSF escape and its implications in HIV reservoir establishment and viral suppression. By joining the Global HIV-1 CSF Escape Research Consortium you will be assisting in the creation of sustainable data accessible on a global platform and interacting with colleagues addressing this important issue. Please contact Allison Dye to join the consortium and/or request additional information.