# Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC)

> **NIH NIH U24** · RESEARCH TRIANGLE INSTITUTE · 2020 · $1,149,560

## Abstract

Project Summary
RTI proposes to serve as the Data Management and Coordinating Center (DMCC) for the Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs). In this role,
we will provide the leadership and advanced infrastructure necessary to unite the CRCs into a cohesive
research Network that fosters continued significant progress in our understanding of the etiology, mechanisms,
and potential treatments for ME/CFS. Specifically we will (1) foster a high level of scientific rigor, transparency,
and collaboration within the ME/CFS research community by providing medical and scientific leadership that
will integrate the diverse strengths of the CRCs and advocacy partners; (2) facilitate broad scientific use of
ME/CFS data by integrating clinical study data and other data sources into a mineable resource; (3) gain novel
insights into the diagnosis, etiology, prognosis, and treatment of ME/CFS through the application of advanced
biostatistics and computing techniques in the analysis of consolidated study data; (4) promote patient
engagement and effective knowledge dissemination within the ME/CFS community through active partnerships
and a data-driven communications strategy; (5) ensure high-quality reproducible studies through a managed
study development and implementation process, the use of common data elements, and the application of
consistent procedures across studies and research sites; and (6) enhance ME/CFS research efficiency,
productivity, and impact by providing operational, communications, and logistical support to the ME/CFS CRCs
Network. This application has specific strengths that will enhance the scientific productivity of the Network: (1)
The DMCC will be led by Drs. Rick Williams and Peter Rowe, who will promote Network collaboration by
providing proven unbiased leadership that is not associated with any of the CRCs. (2) RTI's scalable
informatics platform incorporates cloud computing and database federation, supporting cost-effective storage
and on-demand analytic capacity ideal for large-volume data of diverse types in multiple locations. (3) RTI's
partnership with respected advocacy/support organization Solve ME/CFS Initiative (SMCI), will permit use of
the SMCI registry to support patient recruitment, and enable a multi-tiered data-driven strategy to improve
community engagement and information dissemination. (4) The DMCC Analytics Core features expertise in
high-performance computing and a novel integration of qualitative and quantitative research experience that
brings a patient-oriented perspective and the tools of modern data science to the rich but challenging array of
data that marks the frontier of ME/CFS research.

## Key facts

- **NIH application ID:** 9964929
- **Project number:** 5U24NS105535-04
- **Recipient organization:** RESEARCH TRIANGLE INSTITUTE
- **Principal Investigator:** Linda Morris Brown
- **Activity code:** U24 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,149,560
- **Award type:** 5
- **Project period:** 2017-09-25 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9964929

## Citation

> US National Institutes of Health, RePORTER application 9964929, Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) (5U24NS105535-04). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/9964929. Licensed CC0.

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