AD Knowledge Portal
The AD Knowledge Portal is a public data repository that stores and shares data, analyses, and tools generated by multiple collaborative research programs focused on aging, dementia, and Alzheimer’s disease (AD), funded by the National Institute on Aging (NIA). These programs embrace open science principles and require data to be released in a rapid manner, according to the NIH Genomic Data Sharing Policy. All data, methods, and results generated are distributed under F.A.I.R. (Findable, Accessible, Interoperable, and Reusable) principles.
In total, the AD Knowledge Portal currently hosts data and resources generated across 100+ grant projects in 10+ programs or centers supported by the NIA and includes “omics” data from human samples and experimental model systems, as well as bioinformatic analyses from research teams and cross-consortium working groups.
Repository Scope
Research Areas
Life Sciences; Basic Biological and Medical Research; Biochemistry; Developmental Biology; Bioinformatics and Theoretical Biology; Microbiology;
Data Types
Experimental; Observational; Code; Survey; Text; Tabular; Synthetic/Simulation; Geospatial; Audio; Video; Image; Genomic/Molecular; Biomedical; 3D Models; Machine learning;
Data Types Encouraged/Permitted
AD Knowledge Portal accepts data relevant to Alzheimer’s Disease and relevant dementias, subject to approval in advance by program staff at the NIA. All data submitted must be made available for general research use under the terms of the AD Knowledge Portal Data Use Certificate.
Fee for JHU Researchers to Deposit Deposits up to 100GB may be free, depending on data type and governance complexity.
Data Limit
No limit, but deposits over 100GB may incur a fee.
Data Access
Option for Data Access
Controlled Access; Open Access;
Details on Data Access
While all data uploaded to Synapse falls under the principles of Open Data, individual level human data is Controlled Access Data and requires the submission of an Intended Data Use Statement and a Data Use Certificate (DUC). Individual-level data in any form (raw, processed, derived) must not be redistributed outside the AD Knowledge Portal, and data can only be downloaded to a NIST-800-171 compliant environment. You can find more information about Synapse Governance here.
Sensitive Data
Human Data Accepted
Yes
Level of Deidentification Required
AD Knowledge Portal requires submitters to follow the HIPAA Safe Harbor protocol for data shared via both open and controlled-access. De-identified human data must be made available for General Research Use (GRU), which means that the data can be used for broad research purposes without limitations like disease-specific research or institution-specific research. GRU is the broadest standard NIH consent group option for controlled-access data. Data contributions must adhere to the terms of the AD Knowledge Portal Data Use Certificate.
Administration
Required Funder
National Institute of Aging (NIA): AD Knowledge Portal accepts data from these NIA-supported programs: https://adknowledgeportal.synapse.org/Explore/Programs. If you are not funded by one of these and want to submit data, you need to submit an application to be a Community Contributor: https://adknowledgeportal.synapse.org/Contribute
Persistent Identifier
DOI
Data Retention Period
No stated retention period
AI LLM Policy
AD Knowledge Portal's Data Use Certificate states that use of AI tools must be in compliance with NIH guidelines and be described in the Intended Data Use statement
re3data
re3data Keywords:
AMP-AD Knowledge Portal; DREAM Challenges; GitHub; NF Data Portal; TCGA Pan-Cancer Working Group; biomedicine; query structured data; record provenance; research communities
re3data Repository Contact
https://sagebionetworks.jira.com/servicedesk/customer/portal/9/group/26/create/162