Long COVID

As the rate of COVID-19 infection progresses in many regions of the United States, many patients, after experiencing an acute infection, continue to experience debilitating symptoms that result in a viral-induced fatigue syndrome with similar symptomatology to ME/CFS. It is well understood that viral or bacterial insult combined with other factors likely contribute to the onset of ME/CFS. However, the rate of post COVID-19 ME/CFS could drive these numbers up to staggering proportions, with one million ME/CFS cases in the U.S. today, prior to the pandemic. 

Study Design

This epidemiologic study surveys a community-based population in sufficient numbers to estimate the risk of long-term ME/CFS-like symptoms following infection of COVID-19. This part of the study will utilize two components: a longitudinal survey population, and a clinic-based assessment/phenotyping population. The longitudinal survey population will comprise of a large online survey component involving the study populations and the clinic-based assessment/phenotyping population consisting of a smaller on-site component to phenotype the ME/CFS-like illness.

We are recruiting people who had an initial COVID-19 positive test and still have symptoms 3 months later, from health care systems and clinical practices in Broward and Miami Dade counties. This includes Baptist Health System, Jackson Memorial Health System, UHealth (University of Miami) the VA (Miami and Broward Veterans Health clinics) , Broward General, NSU Health, Community Health of South Florida, Inc. (CHI) and several clinics that specialize in acute or post COVID-19 care in the two counties. Patients in these health care systems or clinics are receiving emails or text messages that include a link to enroll in the study. English and Spanish-speaking participants are welcome.

The longitudinal survey population will be contacted at least four times a year for health and trajectory assessments over a three-year period. In the phenotyping/clinical assessments, additional survey questionnaires, physical examinations, echocardiograms, spirometry measurements, laboratory testing, and expert clinical examinations will be performed.

If you think you are eligible and did not receive an email or text, contact us at postcoviduppstudy@nova.edu or join the study by completing the COVID-UPP Survey. Study subjects are compensated for their time.

This study will conduct a phenotyping assessment to describe the persistent illness that can follow acute COVID19 infection, evaluating clinical presentation and biomarker expression in a subset of the cohort that is also enrolled in a longitudinal study of prevalence, trajectory, and illness severity. This study will involve an on-site clinical assessment to phenotype the ME/CFS-like illness and will draw from an unrecovered symptomatic group, versus a fully recovered comparison group of participants who are currently enrolled in the companion study.

Principal Investigator: Nancy Klimas, MD, NSU & Palacio - VA

The project goal is to inform recruitment and data collection methods and the interpretation of the findings from the COVID-UPP Study.

Objectives:

1. Describe barriers and facilitators to, and motivations for, participating in COVID research studies for people with long COVID conditions to inform the design of the COVID-UPP Study.
2. Describe perceptions of long COVID care and treatment and long COVID research and how it may impact participation into long COVID studies.

Principal Investigator: Nancy Klimas, MD, NSU & Palacio - VA

Nancy Klimas, M.D.
PI Phenotyping Study

Ana Palacio, M.D.
PI Longitudinal Study

Patrick Hardigan, Ph.D.
PI and Data Statistician

Max Barbosa Mendoza
Data Analyst

Nicole Velasquez
Longitudinal Study Coordinator

Juanita Reyes
Phenotyping Study Coordinator

Devra Cohen
Project Manager Regulatory Affairs

Korrine Rodriguez, M.A.
Project Manager Operations

Sashah Damier
REDCap Manager

Kamoly Dorneles, B.S.
Quality Control Specialist

Sylvia Garay
VA Recruitment and Quality Control Specialist