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Translational Capabilities: Expand biorepository infrastructure (Milestone 4.D)

Expand biorepository infrastructure to enable storage and rapid distribution of clinical data and biosamples collected from diverse populations for deep molecular phenotyping. These resources should include biorepositories for samples and clinical data from ongoing clinical trials to support multiomic data generation.


Success Criteria

  • Provide support for storage and rapid distribution of biosamples from relevant NIH-funded clinical research studies to ensure that biosamples generated from federally-funded research can be maintained and made available to all qualified researchers after the funding cycle ends.

  • Develop standard consenting language, simplified data and material transfer agreements, and support data and sample sharing platforms to ensure the rapid, widespread, appropriate, and productive use of data and samples.

  • Improve human tissue banking and distribution practices to improve reliability and reproducibility of human brain studies on brain aging and AD/ADRD.

  • Improve access to post-mortem neuropathology data and associated longitudinal antemortem data and biosamples and standardization across assays to enable more effective use of datasets generated by different research groups.

Summary of Key Accomplishments

The NIA-supported National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) hosts biosamples from clinical research studies and provides access to these biological materials to qualified researchers.

NIA also supports an array of clinical research studies that are generating biosamples from diverse populations and making these invaluable resources available. The NIA/NIH-supported Alzheimer’s Biomarker Consortium Down Syndrome (ABC-DS) is a multidisciplinary, multi-institutional longitudinal study examining biomarkers of AD in a large cohort of adults with Down syndrome. ABC-DS provides rapid public access to all data via the Laboratory of Neuroimaging data repository and access to the biological samples via NCRAD.

NIA supported the development of the data infrastructure for the RUSH AD Research Resource Sharing Hub, a web-based portal for surveying and requesting rich, longitudinal data and biosamples from five aging cohorts with Caucasian, African American, and Latino participants.

This information is current as of July 2022.


Research Implementation Area
Translational Tools, Infrastructure, and Capabilities
Timeline
2016–2024
Status
In Progress

Accomplishments/Implementation Activities

Funding Initiatives

Research Programs and Resources

Research Highlights

Relevant Recommendations

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