- Follow-Up Study (FUS) and FUS 2.0
- Genome Center for Alzheimer’s Disease (GCAD)
- National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD)
- The National Institute on Aging- Alzheimer’s Disease Family-Based Study (NIA-AD FBS)
- National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS)
- Uniformed Services University The American Genome Center (USU TAGC)
Follow-Up Study (FUS) and FUS 2.0
Margaret Pericak-Vance, Richard Mayeux, Badri Vardarajan
Jeffrey Vance, Michael Cuccaro, Brian Kunkle
Margaret Pericak-Vance, Clilfton Dalgard, Anthony Griswold, Brian Kunkle, Badri Vardarajan
ADSP Follow-Up Study (FUS) Page
ADSP-FUS is funded by the NIA to identify, organize and collate Alzheimer’s disease and dementia data sets for Whole Genome Sequencing and genome-wide array data generation with a focus on underserved and underrepresented populations and groups. ADSP-FUS collaborates closely with NCRAD for sample processing and quality control, with UHUHS for WGS, Hussman Institute for Human Genomics (HIHG) Center for Genomic Technology (CGT) for genotyping data and with GCAD for harmonization of sequence data. In addition, ADSP-FUS harmonizes the available clinical data for consistency across and within WGS data sets. ADSP-FUS data sets include both Alzheimer’s disease specific cohorts as well as available cohorts with cognitive data that enables a diagnosis of dementia. In phase 2 (FUS 2.0), ADSP-FUS will continue to focus on underserved groups including Blacks, Hispanic/Latino and Asian cohorts.
Genome Center for Alzheimer’s Disease (GCAD)
GCAD is funded by the NIA to harmonize relevant whole genome/exome sequencing data for the identification of risk/causative/protective genetic variants and eventual therapeutic targets for AD. GCAD is responsible for generating project-level sequence datasets, implementing quality control (QC) on them, and making them publicly available for research. Going forward, GCAD will extend data production to generate genotype calling for structural variants (SVs) and process/harmonize functional genomics data to extend AD genomic analyses.
National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD)
The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) is a large NIA-funded biorepository supporting research focused on Alzheimer’s disease and related dementias. NCRAD currently serves as a central biorepository that banks and distributes DNA, RNA, plasma, serum, lymphoblastoid cell lines, peripheral blood mononuclear cells, fibroblasts, induced pluripotent stem cells, cerebrospinal fluid, brain tissue and stool. NCRAD coordinates the shipment of DNA for centralized genotyping or sequencing for many studies including the Alzheimer’s Disease Sequencing Project (ADSP).
The National Institute on Aging- Alzheimer’s Disease Family-Based Study (NIA-AD FBS)
The National Institute on Aging- Alzheimer’s Disease Family-Based Study (NIA-AD FBS) is a research resource grant that provides clinical information, genetic data and biological specimens to qualified researchers throughout the world. We have recruited 9,682 family members from 1,681 families of which 10% are African American, 24% are Caribbean Hispanics, 8% are listed as “other”, and 58% are white non-Hispanic. This is the largest collection of multiplex AD families recruited and longitudinally assessed worldwide. We collect blood for DNA, plasma, peripheral blood mononuclear cells, and brain tissue at autopsy. All biological resources are stored at NCRAD.
National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS)
Funded in 2012, NIAGADS became the NIA-designated national data repository to facilitate data sharing for the study of the genetics of Alzheimer’s disease and other related dementias (ADRD). NIAGADS is the data coordinating center for ADSP, responsible for collecting phenotypes and consent definitions from 53 ADSP cohorts (26 consent levels consolidated from 58 different definitions/135 institution IRBs), preparing all of the files for release, and coordinating data access by facilitating ADSP analysis workgroups. The NIAGADS Data Sharing Service (DSS) was developed in 2018 to host and share data generated from the Alzheimer’s Disease Sequencing Project (ADSP) with the research community. Qualified investigators can submit Data Access Requests (DARs) through the DAR Management (DARM) system to be reviewed by a Data Access Committee made up of NIH officials and independent UPenn representatives. NIAGADS has processed 374 DARs and renewals since ADSP started in 2012
Uniformed Services University The American Genome Center (USU TAGC)
The American Genome Center (TAGC) at the Uniformed Services University of the Health Sciences (USUHS) is supported by NIA to accomplish whole genome sequencing data generation, sample-level data quality assurance, long-term data archival and data transfer to GCAD. TAGC also evaluates genome sequencing methodologies, technologies and workflows for process improvement and validation towards applications in population genomics research. Future capabilities for large-scale multi-omics data generation for functional genomics research of dementia consortium efforts is underway.