# Clinical Core

> **NIH NIH U54** · JACKSON LABORATORY · 2020 · $188,388

## Abstract

PROJECT SUMMARY CLINICAL CORE
The goals of the Clinical Core are 1) to accrue the necessary samples and associated clinical data from Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients and healthy subject cohorts to support the
research projects of the proposed ME/CFS Collaborative Research Center (ME/CFS CRC), and 2) to engage
the ME/CFS patient and advocate community through online platforms and outreach. The Clinical Core will be
based at the Bateman Horne Center of Excellence (BHC), a patient-centered research and clinical care center
focused specifically on improving the clinical management of ME/CFS and fostering research into biomarker
discovery and mechanisms of disease. The Core will implement standardized processes for subject recruitment,
enrollment and clinical specimen collection, clinical data acquisition (in coordination with the Data Management
and Coordination Center) and subject follow up. It will implement clinical evaluation to objectively quantify
orthostatic intolerance, unrefreshing sleep and cognitive efficiency. It will also oversee storage and distribution
of clinical samples to ME/CFS CRC investigators. The Clinical Core will also leverage BHC's expertise in patient
engagement and its extensive network of patient partners and advocates to facilitate community support for the
proposed research and retention of recruited subjects. A community engagement coordinator will work with
enrolled ME/CFS patients to regularly self-track, through online App in collaboration with “We are Curious”
platform, their symptoms and treatments, along with daily activity, dietary interventions, and environmental
exposures, providing support and guidance throughout to facilitate retention throughout the study period. The
Clinical Core will be led by Drs. Lucinda Bateman and Suzanne D. Vernon, both deeply experienced and
respected members of the ME/CFS clinical and research communities. Under their oversight, the Clinical Core
will address the theme of the ME/CFS CRC by enhancing patient engagement and subject participation,
improving sample and clinical data collection, ensuring efficient selection of subjects, and facilitating acquisition
of robust and relevant patient parameters. The Specific Aims are: 1) To identify, refer and enroll patients with
new-onset ME/CFS along with age, race and sex-matched controls for longitudinal clinical tracking and serial
sample acquisition; 2) To conduct clinical evaluations to objectively define fatigue and daily function, post-
exertional malaise, unrefreshing sleep, cognitive impairment and orthostatic intolerance using common data
elements, standardized questionnaires and devices; 3) To oversee storage and sharing of clinical phenotype
and biological sample data in coordination with the Data Management and Coordination Center (DMCC); and 4)
To partner with We are Curious and MEAction groups to develop questionnaires, tags and tracking systems that
reflect patient symptoms and experien...

## Key facts

- **NIH application ID:** 10011902
- **Project number:** 5U54NS105539-04
- **Recipient organization:** JACKSON LABORATORY
- **Principal Investigator:** Suzanne D Vernon
- **Activity code:** U54 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $188,388
- **Award type:** 5
- **Project period:** 2017-09-30 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10011902

## Citation

> US National Institutes of Health, RePORTER application 10011902, Clinical Core (5U54NS105539-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10011902. Licensed CC0.

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