About

Data Portal Overview

The mapMECFS website serves as the largest data sharing portal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and is endorsed as an approved NIH repository. mapMECFS was created as part of the NIH-funded ME/CFS Research Network (MECFSnet) and is supported by the network's Data Management and Coordinating Center (DMCC).

This website enables researchers to gain a broader view of ME/CFS by:

• Bringing together the data that researchers have collected across the multiple systems affected by ME/CFS
• Providing a dynamic navigation portal to search across these domains
• Facilitating the integration of complementary data types to offer a new, more complete picture of the disorder

Mission

Our mission is to help ME/CFS researchers discover new insights about the disorder, promote data sharing between experts, and present a comprehensive picture of the hallmarks of this disorder. We hope these efforts help millions of people with ME/CFS by enabling a faster path to better diagnostics and treatments.

Registration Process

The mapMECFS data portal is open to any researcher who will use the data for research purposes only and is able to comply with the Data Use Agreement (DUA). New users must submit the registration form, including a brief description of how they would like to use the system, and agree to the mapMECFS DUA terms.

The registration form will be sent to the NIH for review and you will be notified when your account has been approved. The approval process should be quick (typically less than 2 days) and you will be notified of any delays.

While your account is pending approval, you will be able to log into the system, but you will not have access to any data. Once approved, a user-specific Organization will be created. A written email request is required to join an existing Organization or to add other mapMECFS-approved site users to your Organization (enabling viewing of private datasets). Please see more information within the Website Structure and Terminology section at the bottom of this page.

Please email mapmecfs@rti.org if you need assistance with registering.

Data Use Agreement

mapMECFS site users must follow the DUA that was agreed to during registration. Please see a copy here. If you become aware of a violation of the terms, you must notify site administrators by emailing mapmecfs@rti.org with a description of the violation. User accounts may be suspended while the incident is reviewed.

Data Submission Agreement

If users wish to upload their own data to mapMECFS, they must submit a Data Submission Request and subsequently agree to our Data Submission Agreement (SA).

The mapMECFS Data Access & Quality Committee (DAQ) will then review the data. To submit data to mapMECFS, please reach out to the DAQ via mapMECFS (mapmecfs@rti.org) to arrange a meeting for discussing the dataset submission. It is advisable to schedule this meeting at least 2 months prior to the desired submission date. Please see more information within the Upload and Share Data section at the bottom of this page.

Privacy Policy

mapMECFS site users must agree to the privacy policy during registration and on login. Please see a copy here.