MapMECFS
mapMECFS is an NIH approved data repository that houses Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research data and results from across many biological and clinical disciplines. mapMECFS was created by the ME/CFS Research Network with funding from multiple NIH Institutes. It is hosted by RTI International, the ME/CFS Research Network’s Data Management and Coordinating Center.
About[edit | edit source]
mapMECFS is the largest data repository for ME/CFS research. This repository provides access to complex experimental data with the goal of advancing discoveries, including diagnosis and treatments, for ME/CFS and related diseases.
Types of data accessible on mapMECFS include:
- Demographic, Health, and Survey Data
- Gene expression
- Cytokine assays
- Metabolomics
- Proteomics
- miRNA
- Methylation
- Supporting phenotype and data dictionary files
mapMECFS also serves as the repository for all data generated from biospecimens obtained from searchMECFS, and for clinical data from the Chronic Fatigue Initiative (CFI) Study, NIH Intramural Study on ME/CFS, and the Jackson Laboratory (JAX) Clinical Core.
Aims[edit | edit source]
mapMECFS aims to enable 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[1][2]
mapMECFS website workflow[edit | edit source]
Registration and Access[edit | edit source]
The mapMECFS user registration process is open to any researcher planning to use the data for research purposes. Interested researchers can register at the following link: https://mapmecfs.org/user/register
The registration process involves agreeing to a Data Use Agreement (DUA) and submitting a registration form, which is then reviewed by the NIH. Once approved, users will have access to all publicly available datasets on the site.
Data Privacy[edit | edit source]
Participant privacy is a top priority of mapMECFS and it is covered extensively within the mapMECFS DUA. All data uploaded and subsequently publicly released on mapMECFS must be free of both protected health information (PHI) and personally identifiable information (PII). The DUA also covers responsible data use including refraining from attempting to identify participants, safeguards against unintentional disclosure, prompt reporting of any unauthorized use, and restrictions on using the data for clinical or medical purposes.
Related Articles and Presentations[edit | edit source]
Funding[edit | edit source]
The National Institute of Neurological Disorders and Stroke of the National Institutes of Health are providing funding for MapMECFS, under grant award number U24NS105535.[1][2]
Online presence[edit | edit source]
Funding and Support[edit | edit source]
Five NIH Institutes - National Center for Complementary and Integrative Health (NCCIH), National Heart, Lung, and Blood Institute (NHLBI), National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Neurological Disorders and Stroke (NINDS), and National Institute on Alcohol Abuse and Alcoholism (NIAAA) - provide funding for mapMECFS through grant U24-NS-105535 to RTI International, the Data Management and Coordinating Center for the ME/CFS Research Network. RTI International is responsible for the design and development of mapMECFS.[2][3]
Contact Information[edit | edit source]
The mapMECFS Support Team at RTI International can be reached via email at: mapmecfs@rti.org
Learn more[edit | edit source]
References[edit | edit source]
- ↑ 1.0 1.1 "About". mapMECFS. Retrieved September 17, 2022.
- ↑ 2.0 2.1 2.2 "mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites". ResearchSquare. May 13, 2021. doi:10.21203/rs.3.rs-522847/v1. Retrieved September 17, 2022.
- ↑ Mathur, Ravi; Carnes, Megan U.; Harding, Alexander; Moore, Amy; Thomas, Ian; Giarrocco, Alex; Long, Michael; Underwood, Marcia; Townsend, Christopher; Ruiz-Esparza, Roman; Barnette, Quinn (November 8, 2021). "mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites". Journal of Translational Medicine. 19 (1): 461. doi:10.1186/s12967-021-03127-3. ISSN 1479-5876. PMC 8576927. PMID 34749736.
