FAQ

Accessing Data

Why should I be certified on Synapse, and what does that involve?

If you plan to upload data to your project, it is essential to become certified on Synapse beforehand. Certification is also required to request access to specific Controlled Access data. The certification process involves completing a short quiz that ensures you understand privacy and security issues related to using a platform that stores human subjects research data. For more details on the different levels of Synapse users and their respective capabilities, please refer to this link.

How can additional people on my team get access to Controlled data?

You can find complete instructions here.

My access request was approved, but I still cannot download the data. Why is this?

Ensure that you have accepted all terms and conditions and that you are logged in with the account that received approval. For more information on data access, visit this page.

My access request was denied. Why?

Check your email for a detailed explanation regarding the rejection of your request. Common issues include: mismatched Synapse usernames on the Data Use Certificate (DUC) and the request, the absence of a signing official on the DUC, missing pages in the uploaded document, incomplete fields for the project lead and/or institution, or insufficient detail in the intended data use (IDU) statement (IDUs should consist of 1-3 paragraphs addressing the following: What do you want to do? Why are you doing it? How do you want to do it?).

Someone else originally added me to their Data Use Certificate. How can I renew my access?

The primary requestor must be the individual to renew the request.

I have moved to a new institution. Can I keep my current data access?

No, the data access request and associated DUC only cover individuals from the same institution as the signing official. You must update your access request to reflect your new institution (in the affiliation field) and submit a new DUC signed by a signing official at your new institution.

My access has expired, what do I do?

If you require continued access to the data, you will need to submit a new access request. If you are concluding your access, you must delete all copies of the data that your team has downloaded. The terms of use also stipulate that you provide a brief summary of what you accomplished with the data.

Why are ages over 89 grouped into bins in the Explore by Participants table?

Certain pieces of data can, either individually or in combination, uniquely identify an individual. Including ages over 89 necessitates a higher level of data protection in accordance with HIPAA regulations.

Exploring Data

What data and tools are available in the portal?

The portal offers a wealth of multi-omic data derived from both human living cohorts and non-human species. The specific data provided varies based on the assay and study, typically encompassing both raw and processed data. Additionally, the portal grants access to a range of computational and experimental tools designed for the general use of the research community.

When accessing data, how can I determine if it’s raw or processed?

This specific annotation is assigned to data, allowing you to filter for it using the filtering tools available on any of the Explore pages. Use the Data Subtype to identify raw data (e.g., fastq files) or processed files (e.g., gene count matrices), or the File Type filter to assist in distinguishing between raw and processed files.

Exploring Metadata

What is metadata and why is it important?

Metadata provides essential information about the data available in the portal. It can be linked to individual subjects and/or specific files.

For further information, including guidance on annotating your own data with metadata, see About Metadata.

How can I find the metadata associated with a study?

There are two primary methods to access the metadata files linked to a study in the ELITE Portal:

Click Explore → Studies → locate and click on the Study of interest to access the corresponding Study Details page → click on the Study Data tab → navigate to the Study Metadata section, which displays a table of all the metadata files for that study.
Click Explore → Data → utilize the Study section of the Filter By toolbar on the left to select your study of interest → use the Data Subtype section to select metadata.

For a more detailed breakdown of these steps, please see User Guide #1: Find and Download Data, Metadata, and Annotations.

Why are there multiple metadata files for a study?

There are three primary types of metadata files that provide information about: 1) the individual (e.g., human subject, animal, or cell line), 2) the specimens (“biospecimens”) used in assays (e.g., details about brain samples from an individual subject), and 3) assays and assessment variables (e.g., specifics regarding RNAseq library preparation or proteomics sample preparation). Separating this information into distinct files minimizes the risk of copy errors and enhances the efficiency of adding new details about individuals, biospecimens, and assay specifics. It also allows you to collect only the information necessary for your desired dataset.

For additional insights, including how to annotate your own data with metadata, see About Metadata.

How do I combine metadata files to get the full dataset?

In studies where data has been generated from a specimen taken from an individual, the biospecimen metadata file serves as the link between the individual metadata file and the assay metadata file(s). These can be connected by joining the individual and assay metadata files to the biospecimen using the individualID and specimenID, respectively. In studies where data has been generated based on an assessment, the data file and assay metadata can be directly linked to the individual metadata file through the individualID. For a more detailed breakdown of these steps, please see our Use Case #3: Accessing and Joining Metadata Files With Data.

How can I find summaries of the methods used to generate data?

Documentation and methods are available on each Study Details page. Click Explore → Studies → locate and click on the Study of interest to access the corresponding Study Details page. Some studies may also provide additional documentation and detailed protocols as PDF files, which have been annotated with metadataType=protocol.

Publishing on ELITE Portal Data

Is there an embargo on publishing results from the use of any of this data?

Data from the Portal is available for general research use, with no embargo on publishing results.

Human individual-level data is classified as Controlled Access. This means that you cannot share individual-level data in any form (raw, processed, derived) outside the ELITE Portal.

How can I acknowledge ELITE Portal datasets in a manuscript?

The data available in the Portal is made possible through the participation of research volunteers and the contributions of collaborating researchers. Any publications resulting from your use of the data must include appropriate Acknowledgement Statements to comply with community guidelines.

Where can I share information about my upcoming publications that used ELITE Portal data?

If you wish to provide updates on datasets or share recent publications, submit content for the public newsletter by contacting us through the Discussion forum.

Contributing Data

Who can contribute data?

Institutions funded by the NIA-supported Exceptional Longevity Translational Resources Projects are permitted to contribute data to the ELITE Portal.

If you are not funded by the NIA EL Projects but possess data, analyses, or tools that may benefit Exceptional Longevity research, you can apply to become a community contributor and have your resources hosted in the portal through the Community Data Contribution Program (CDCP). Applications to the CDCP are reviewed and approved by the EL DMCC Steering Committee. The CDCP is currently in the pilot phase and will be launched to the community in 2025.

What types of data should be shared and in what format?

Refer to the article on How to Format your Data.

Communications and News

How can I receive updates on data releases and new portal features?

The ELITE Portal publishes a quarterly newsletter that provides updates on data releases and new portal features. You can view all previous newsletters and sign up to receive the ELITE Portal Newsletter.

How can I find out when new data is available?

New data and updates to existing content are shared through regular Data Releases. You can also find announcements about these data releases in the Discussion forum. To receive updates directly, consider subscribing to the ELITE Portal Newsletter.

Additional Help

How can I give feedback on the portal or this help site?

If you have questions or would like to provide feedback about the ELITE Portal or this help site, please reach out to us via the Discussion forum.