National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS)

The National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) is a national data repository that facilitates access of genetic data to qualified investigators for the study of the genetics of early onset Alzheimer’s Disease (EOAD), late-onset Alzheimer’s disease (LOAD), and Alzheimer’s Disease Related Dementias (ADRD). Collaborations with large consortia such as the Alzheimer’s Disease Genetics Consortium (ADGC), Cohorts for Heart and Aging Research in Genomic Epidemiology (CHARGE) Consortium, and the Alzheimer’s Disease Sequencing Project (ADSP) allow NIAGADS to lead the effort in managing large AD genetic datasets that can be easily accessed by the research community. All data derived from NIA funded Alzheimer’s Disease (AD) genetic studies are expected to be deposited in NIAGADS or another NIA approved site.

Principal investigators can request DSS distributed data through the Data Access Request Management (DARM) system by logging in using their eRA Commons ID. Once an application is approved by the NIAGADS ADRD Data Access Committee (NADAC) and Data Use Committee (DUC), the data can be accessed through the Data Portal and downloaded directly or through Amazon EC2. Investigators must be permanent employees of their institution at a level equivalent to a full-time assistant, associate, or full professor senior scientist with responsibilities that most likely include laboratory administration and oversight. Laboratory staff and trainees such as graduate students, and postdoctoral fellows are not permitted to submit project requests.

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National Social Life, Health, and Aging Project (NSHAP)

The National Social Life, Health, and Aging Project (NSHAP) is a longitudinal, population-based study of health and social factors, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health and illness, medication use, cognitive function, emotional health, sensory function, health behaviors, social connectedness, sexuality, and relationship quality. This study is conducted by a team of researchers from several academic institutions, led by the University of Chicago, and is funded by NIA and National Opinion Research Center (NORC) at the University of Chicago. The study has two stages. The first stage was conducted between 2005 and 2006 and collected data from 3,005 adults aged 57-85 nationally. The second stage was conducted between 2010 and 2011, including 1,400 participants from the first stage.

 

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OASIS

OASIS is a key component of the Centers for Medicare and Medicaid (CMS) partnership with the home care industry to foster and monitor improved home health care outcomes.  It is also proposed to become an integral part of the revised Conditions of Participation for Medicare-certified home health agencies (HHAs). The Outcome and Assessment Information Set-C (OASIS-C) is a group of data elements that: (1) Represent core items of a comprehensive assessment for an adult home care patient; and (2) Form the basis for measuring patient outcomes for the purposes of outcome-based quality improvement (OBQI)

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Panel Study of Income Dynamics (PSID)

The Panel Study of Income Dynamics (PSID) is a longitudinal study that began in 1968 with a nationally representative sample of over 18,000 individuals living in 5,000 families in the United States. In this study, information on these participants and their descendants has been collected continuously, including data covering employment, income, wealth, expenditures, health, marriage, childbearing, child development, philanthropy, education, and numerous other topics. The PSID is directed by faculty at the University of Michigan, and the data are available on this website without cost to researchers and analysts. The study has three stages: Core Stage, Child Development Supplement (CDS), and Transition into Adulthood Supplement (TAS). 

 

Core Stage is the primary stage of data collection and involves a survey of all sample members and their families. The survey collects information on income, employment, education, health, and family structure.

 

Child Development Supplement focuses on the development of children in PSID participant families. It collects information on these children’s health, education, behavior, and other relevant factors.

 

Transition into Adulthood Supplement focuses on the transition of PSID family members into adulthood. It collects information on educational and career paths, family formation, health, and other relevant factors.

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Religious Orders Study

The Religious Orders Study is a collaborative study with Rush and other U.S. medical centers. It involves more than 1,100 older religious clergy (nuns, priests and brothers) who have agreed to medical and psychological evaluation each year and brain donation after death. Researchers are using information from the study to discover what changes in the brain are responsible for memory and movement problems. The study also looks closely at the transition from normal functioning of the aging brain to the mild cognitive impairment that can be an early sign of Alzheimer’s disease.

 

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Single-Cell RNA-Seq database for Alzheimer’s Disease (scREAD)

The Single-Cell RNA-Seq database for Alzheimer’s Disease (scREAD) dedicates to management of all the existing scRNA-Seq and snRNA-Seq data sets from the human postmortem brain tissue with AD and mouse models with AD pathology. It provides comprehensive analysis results for 73 data sets from 10 brain regions. These data sets include various types of data, such as control atlas construction, cell-type prediction,identification of differentially expressed genes, and identification of cell-type-specific regulons.

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Study on Global Ageing and Adult Health (SAGE)

The Study on Global Ageing and Adult Health (SAGE) is part of an ongoing program of work to compile comprehensive longitudinal information on the health and well-being of adult populations and the ageing process. The core SAGE collects data on adults aged 18+ years, with an emphasis on populations aged 50+ years, from nationally representative samples in six countries: China, Ghana, India, Mexico, Russian Federation and South Africa. The study is composed of three stages. 

 

Wave 1 total sample size is over 40,000 individuals. 

 

Wave 2 data collection was completed in 2014/15 in five countries. Wave 2 data collection was released in the public domain at the end 2020. 

 

Wave 3 data collection was completed in March 2020.

 

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Survey of Healthy Ageing and Retirement in Europe (SHARE)

The Survey of Healthy Ageing and Retirement in Europe (SHARE) is a research infrastructure for studying the effects of health, social, economic and environmental policies over the life-course of European citizens and beyond. The SHARE contains various types of data, including data of participants’ health status, economic status, social status, psychological status, lifestyle, and biomarker. The study is led by the Munich Center for the Economics of Aging (MEA), which is part of the Max Planck Institute for Social Law and Social Policy in Germany, and funded by the European Commission and NIA. 

 

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The Alzheimer’s Knowledge Base (AlzKB)

The Alzheimer’s Knowledge Base (AlzKB) is an online database that integrates more than 20 different sources of knowledge about genes, pathways, drugs, and diseases to inform AI analyses. It provides comprehensive information on genetic variations related to Alzheimer’s Disease (AD). The database contains single-nucleotide polymorphisms (SNPs) data, insertion data, deletion data, and other genetic variation data. The database was developed by a research team at the University of California, Los Angeles, and is funded by grant R01 AG066833 from the National Institute on Aging (NIA), National Institutes of Health (NIH).

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The Alzheimer’s Disease Genetics Consortium (ADGC)

The Alzheimer’s Disease Genetics Consortium (ADGC) is a collaborative effort that brings together researchers from multiple institutions to study the genetics of Alzheimer’s disease. The primary goal of ADGC is to identify and understand genetic factors that contribute to the risk of developing Alzheimer’s disease and related dementias. By analyzing large-scale genomic data, ADGC aims to uncover genetic variants and mutations associated with the disease, which can lead to a better understanding of the underlying biological mechanisms and potential targets for therapeutic interventions.

The ADGC will provide the most recent and most comprehensive data available. The data sets available are listed on the ADGC Web site (link). These data are QC’ed by members of the ADGC-AC using a uniform process. As noted in the list of cohorts posted on the ADGC web site, some datasets require permission of the PI who contributed the dataset, and it is the responsibility of the SAG PI to seek permission from those PIs to use their data. If requested, imputed data will be provided using the most recent and largest imputation panel (e.g. TOPMed). A minimum phenotype dataset will be provided. If additional phenotypes are needed, the ADGC will work with the investigator to identify and acquire the needed data.

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