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Fresh genetics data, available fast

Marilyn Miller
Marilyn MILLER,
Program Director,
Division of Neuroscience (DN)

I’m happy to be back with tips for our blog readers on getting the most out of NIA’s growing library of Alzheimer’s disease genetics data, along with some updates on the latest resources to aid your research.

The Alzheimer’s Disease Sequencing Project (ADSP) is NIA’s flagship genetics initiative that plays an important role in our efforts to meet the National Plan to Address Alzheimer’s Disease goals. ADSP data are curated and shared through the NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS), which is currently located at the University of Pennsylvania. Through NIAGADS, new ADSP data are expedited to be made available to the broader research community as soon as quality control checks and genetic data harmonization are completed.

Another NIAGADS feature is its Data Sharing Service (DSS), through which ADSP data are securely shared with qualified investigators. This resource also ensures compliance with the NIH Genomic Sharing Policy and human subject research regulations.

How to access ADSP data

If you want to apply for access to ADSP data, the best place to start is the ADSP’s Quick Guide website, which hosts key ADSP information, including the cohorts being studied, types of available data, datasets in each data release, and details on how to apply for access.

NIAGADS requires users to set up an account and then submit a data access request, which, upon approval, grants investigators access for one year. Your application for data must provide a research use statement outlining what you will be studying and how the data will be used. Applications and research use statements are evaluated according to NIH policy and the consent agreements signed by study volunteers regarding how their data are to be shared.

Visit the NIAGADS DSS Documentation page for step-by-step instructions on data access. While NIAGADS provides administrative support, it does not make final decisions on whether data access is granted; rather, those determinations are made by a standard data access committee of NIH officials.

Learn what all the FUS is about

The ADSP Follow-Up Study 2.0 (FUS 2.0) is a helpful new resource launched earlier this year. Later this summer, NIAGADS aims to release data on approximately 37,000 whole genomes to find novel genetic variants that modulate Alzheimer’s disease risk. These data include harmonized whole genome sequence data for all components of the ADSP.

FUS 2.0 follows on three other recent initiatives to enhance the ADSP’s capability to identify new risk and protective genes:

  • The Phenotype Harmonization Consortium is aggregating and harmonizing clinical, cognitive, imaging, and biomarker phenotype data from all participating ADSP cohorts.
  • The Functional Genomics Consortium (FGC) is generating “omics” experimental data to further characterize ADSP genetic findings and to help better define subtypes of Alzheimer’s and related dementias.
  • The Artificial Intelligence/Machine-Learning Consortium employs sophisticated computational methods to further integrate and analyze ADSP data and optimize subject selection for clinical trials based on participants’ genetic characteristics.

Reach out if you need help!

Email with questions about accessing ADSP data or related requests. We wish you the best of luck boldly exploring new frontiers of Alzheimer’s disease genetics aided by these rich data resources!

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