Governance
Data Access
Anyone can browse public content on the ELITE Portal, but you need a Synapse account in order to download data. If you’re new to Synapse, you may want to explore our Synapse documentation for more information and instructions.
Most data on the ELITE portal is considered Controlled Access—this applies to individual-level Human data and requires you to request access by:
Reading and electronically agreeing to data-specific terms
Upload a brief Intended Data Use (IDU) statement to be posted publicly on Synapse (1-3 paragraphs in English), explaining your research objectives and hypothesis and how you plan to utilize these data for your research. The Intended Data Use statement will be posted on the ELITE Portal and must include: Objectives of the proposed research, study design, and analysis plan
Submit the Data Use Certificate (DUC) signed by yourself, your institutional signing official, and all collaborating investigators from your institution who will be accessing the data. A blank DUC template will be available when you begin your data access request.
In some cases, you may also be asked to submit a copy of an Institutional Review Board (IRB) or Independent Ethics Committee (IEC) approval or exemption for your proposed research.
Expected turnaround is within one week of submission. Once approved, data may be downloaded and accessed for one year.
Data Use & Acknowledgement
The complete data terms and conditions of use are outlined in the Synapse Data Governance policies.
Data are made available as Open- or Controlled- Access, where individual-level Human data is Controlled Access, and can not be redistributed. Synapse users also agree not to identify, or make any attempt to identify, any individual humans to which any data pertains. Open Access Data may be redistributed but solely to the extent the redistributing user assures that all subsequent recipients comply with the Synapse Terms and Conditions of Use, the Synapse Privacy Policy, as well as any additional Dataset-specific terms of use.
The data available in the ELITE Portal would not be possible without the participation of research volunteers and the contribution of data by collaborating researchers. All data use must be acknowledged with:
The following ELITE Portal Acknowledgement Statement: "The results published here are in whole or in part based on data obtained from the ELITE Portal.”
The Acknowledgement Statement specific to the study/dataset that you are using for your analyses. You will be prompted to agree to use the acknowledgement statement when you go to access the data through Synapse. You can find these pre-written acknowledgement statements on the relevant Study page associated with the data.
A Data Availability statement in the following format. For details on minting a dataset DOI, see How to get a DOI for your Publication
<data, analysis output, tools (describe content)> are available via the ELITE Portal (https://eliteportal.synapse.org). The ELITE Portal is a platform for accessing data, analyses, and tools generated by the National Institute on Aging (NIA)-supported exceptional longevity projects. The data, analyses and tools are shared early in the research cycle without a publication embargo on secondary use once the data have been made broadly available. For access to content described in this manuscript see: <dataset DOI>