AD Knowledge Portal

Repository Name: AD Knowledge Portal
Repository Homepage URL: https://adknowledgeportal.synapse.org/
Repository Description:

Source: https://www.re3data.org/

Synapse is an open source software platform that clinical and biological data scientists can use to carry out, track, and communicate their research in real time. Synapse enables co-location of scientific content (data, code, results) and narrative descriptions of that work.

Data Collection Policy URL: https://adknowledgeportal.synapse.org/Contribute
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 Explicitly Prohibited: AD Knowledge Portal accepts any data format relevant o Alzheimer's disease research.
Fee for JHU Researchers to Deposit: Free for up to 100 GB. They will provide a quote for larger deposits.
Data Limit: No limit, but deposits over 100GB may incur a fee.
Option for Data Access: Open Access;
Details on Data Access:

Open access or controlled access. Controlled access is managed via the AD Knowledge Portal Data Use Certificate, with the option to choose from a defined set of limits on the use of the data: https://help.adknowledgeportal.org/apd/Complete-Data-Intake.3347906586.html#CompleteDataIntake-Datasharinginformation. Individual level human participant data may not leave the AD Knowledge Portal Environment (enclave sharing).

Human Data Accepted: Yes
Level of Deidentification Required: AD Knolwedge Portal requires submitters to follow the HIPAA Safe Harbor protocol for data shared via both open and controlled-access
Submission Policy URL: https://help.adknowledgeportal.org/apd/Contributing-Data.2184610046.html
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 described in requests for data access.
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
re3data Record URL: https://www.re3data.org/repository/r3d100011894