FAQ

Biospecimens and clinical data collected as part of the NNTC and CHARTER protocols are available from the NNTC by request. Detailed information about specimen and data requests is available here. Selected clinical data variables are available through the NNTC and CHARTER Query Tools to help requestors shape data and tissue requests and identify subpopulations of interest. Additional clinical data, beyond what is available from the Query Tools, is available from the NNTC and CHARTER cohorts and can be requested from the NNTC using the Data Request Application. The clinical data collected for NNTC and CHARTER include standardized assessments of neuropsychological functioning, medical history, measured variables associated with daily functioning, measured laboratory values and medication use history.

Data and specimen requestors are required to share their raw experimental data with the NNTC after their work with the resources has concluded. These experimental research data are curated and are available to researchers for post-hoc analysis and request shaping. The data can be accessed by registered users using the Experimental Studies Data Query Tool.

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The NNTC does not charge requestors for samples provided. Requestors do, however, assume the cost of shipping. In certain cases where special sample processing above and beyond the standard NNTC protocol is required, the requestor may be asked to cover the cost of the additional processing and/or collection.

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Most application reviews are typically completed within two weeks, however, this process can take as long as eight weeks, and sample shipments can take an additional eight to ten weeks following approval. Application review and shipment timelines can be impacted by the complexity and scope of the application, including the number and volume of samples requested, as well as the inclusion and exclusion criteria for defining sample eligibility. For example, a detailed application for a limited number of specimens with well-defined inclusion and exclusion criteria typically requires less shaping and preliminary review by the Data Coordinating Center (DCC), compared to an application with missing information, ambiguous requirements or unclear inclusion/exclusion criteria.

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Follow the same procedures as for sample/data requests, indicating the purpose of the submission is to obtain a letter of support. If you intend to submit a request for a letter to support a grant application, please do so at least 20 business days before the submission deadline of your planned grant application. The NNTC requires additional time to process request applications during grant cycles. Applications submitted to the NNTC later than 20 business days before the grant submission deadline will be processed to the best of our ability, but no guarantee can be made for review and approval prior to your NIH grant submission.

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All requests undergo a review process following the order in which they are received. Upon receipt, the DCC will review each application to ensure completeness of the application and clarity of the resource(s) requested, including the inclusion and exclusion criteria for identifying appropriate cases. After completion of an initial review, the DCC will broadcast the request to the NNTC Allocations Committee for evaluation. The primary criterion by which requests are evaluated is the availability of the research resources(s) of interest within the NNTC. Secondarily, the Allocations Committee will evaluate the feasibility of the methods proposed. If the NNTC cannot adequately fulfill a request based on the inclusion and exclusion criteria as defined or the proposed methods are not suitable for the resource(s) being requested, the Allocations Committee may request revision of the application (e.g. altering the inclusion and/or exclusion criteria or providing additional justification for the methods proposed). Once a request has been broadcast to the Allocations Committee, the committee requires at least two weeks to complete review of the request.

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No. The Query Tools are designed to allow researchers the ability to quickly search and identify cases which may be appropriate to support their research projects. A formal review of the sample inventory to confirm availability will be conducted following approval of your request.

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Registration is required in order to maintain privacy and confidentiality of our enrolled research participants, while also allowing the NNTC to monitor utilization of the resource(s) provided. Registration must be completed prior to submitting a resource request using the request portal at NNTC.org. This registration gives users access to: 1) useful tools for exploring the available clinical and bioinformatics datasets available in the NNTC cohort; 2) the NNTC’s secure system for tissue and data request management; and 3) distribution of research datasets. 

Registration is also required for browsing the experimental data generated by prior requestors. The experimental data is housed in the NNTC Research Database and user accounts for this website are distinct from NNTC.org accounts. Registered users at the NNTC Research Database website are granted access to the NNTC’s experimental database and the ability to search cases and data generated by prior requests. These data may be downloaded and utilized for post-hoc analyses or request shaping. Registration helps the NNTC manage data requests to ensure that proper credit is given to the researcher who originally generated the data and to ensure that data and metadata are stored and transmitted in a secure and appropriate manner.

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Due to high demand, availability of tissue from these and other small sub-regions of the brain may be limited and nearing depletion. As a result, provision of these materials may be reserved for high impact studies related to the unique physiology or function of that brain area for which another region cannot be substituted. If you are interested in these areas, please include in your application a detailed rationale for the inclusion of one or more of these regions, including why your project could not be completed using a larger, more abundant region, along with supporting references. If the request for limited resources is not adequately justified, the NNTC Allocations Committee may recommend provision of a more abundant area at the time your application is submitted.

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This subpopulation of the NNTC cohort includes subjects on antiretroviral treatment with documentation of prolonged viral suppression. These cases may be exceptional utility for research into the eradication of HIV from persistent reservoirs. As such, the specimens, including tissues and fluids, from these participants are reserved for allocation to investigators performing well-justified research into the eradication of reservoirs where HIV persists despite treatment. More information on the inclusion criteria and the suppressed cohort can be found here.

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Please visit https://www.hhs.gov/ohrp/regulations-and-policy/decision-charts/index.html#c1 to determine if your study requires a human subject research application that must be reviewed by an IRB. 

Specimens or data obtained from the NNTC cannot be distributed to third-party companies or institutions without prior consent from the NNTC Steering Committee.