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A network supporting and conducting research
into the Post-COVID Condition (PCC)

What is Long COVID?

Long COVID, or Post-COVID Condition (PCC), is a complicated illness that affects over ten different parts of the body. It shows up in different ways in different people and can be mild or severe, lasting for various lengths of time. People with PCC get treated by doctors from different medical fields, and they might receive care in different places like clinics, hospitals, or rehab centers. In Canada, one of the big problems in dealing with PCC is that it's hard for doctors from different specialties, hospitals, regions, and even countries to work together and share information about it.

14.8%

of adults with a confirmed or suspected infection, experienced longer-term COVID-19 symptoms

47.3%

of adults that experienced longer-term COVID-19 symptoms, experienced symptoms for a year or longer

21.3%

of adults that experienced longer-term COVID-19 symptoms, said that their symptoms often or always limited their daily activities

Engage with Long COVID Web

Update 1

Biomedical

Understand disease mechanisms, identify

biomarkers and

therapeutic candidates

Clinical

Scale up innovative pharmacological and rehabilitation trials

Health Services

Establish integrated

care pathways across Canada

Population Health

Inform harmonized response to personal, societal and economic impacts of long COVID

Women and Children’s Health Research Institute

In-kind
Support

Glenrose Hospital Foundation
Canadian Critical Care Society
Post-COVID-19 Interdisciplinary Clinical Care Network

25K
Category

- Title: Investigating the Inflammatory Pathways in PCC Using Machine Learning: Validation and Refinement of Predictive Models in Diverse Cohorts NPI: Elham Dolatabadi Abstract: Post COVID-19 condition (PCC) is a complex condition with persistent symptoms beyond the acute phase of COVID-19. The causes and the body’s response, including aspects like immunity and antibody production, are not yet fully understood. Our research aims to develop and validate a machine learning model to better understand how the body responds to PCC-related pathogens using data from the CANCOV study. By analyzing demographic, clinical, and immunological data, our model can track symptoms and immune markers, achieving an accuracy of 84%. We plan to further validate this model with a new group of patients to enhance its reliability. This study could lead to improved diagnostic tools and treatments. Research Team: A. Cheung, E. Paramithiotis Research Keywords: post-COVID-19 condition; machine learning; immunology; inflammatory pathway

- Title: Quantifying Physiological and Behavioural Markers in a Mind-Body Intervention for People Living with Long Covid and Myalgic Encephalomyelitis NPI: Victor Ezeugwu Abstract: This study looks at how a mind-body program called the Dynamic Neural Retraining System (DNRS) helps people with long-lasting symptoms after COVID-19 (Long COVID) or a condition called Myalgic Encephalomyelitis (ME), both of which can cause serious tiredness that affects daily activities. We will use Garmin monitors to measure changes in daily steps, sleep, and heart health. Our goal is to see if DNRS improves the health and quality of life for people living with these conditions. We will collect data from 200 participants and analyze it to understand how well DNRS works for people with these conditions. Research Team: D. Gross, S. Vohra, R. Sharma ​Research Keywords: long COVID; intervention; activities; wearables

- Title: Comprehensive Systematic Review of Long COVID Terminology to Aim for a National Consensus Definition of Long COVID NPI: Grace Lam Abstract: Long COVID – the patient-given name – has been referred to with numerous names and definitions in the academic and lay literature. This confusion still contributes to chaotic study populations and delays in appropriate clinical assessments and management strategies, as well as in research. Building on the work of a person with lived experience, we propose a dedicated literature review to comprehensively compile and summarize the evolution of terms that have been used by both patients and academics (aim #1; current application), followed by a national consensus study to define Long COVID by Canadians, for Canadians (aim #2, future proposal). Research Team: A. Bhéreur, K. O'Brien, D. Gross, S. Décary, ​Research Keywords: Long COVID definition; Post COVID-19 condition; clinical definition; research definition; terminology

Our Values

At Long COVID Web, we are dedicated to fostering a community built on core values that shape our mission and approach. We embrace diversity, valuing the richness of individual backgrounds, experiences, and perspectives within the Long COVID community. Our commitment to equity, diversity, and inclusion (EDI) extends to actively addressing barriers like ableism and tokenism that hinder our collective goals.

Community

Long COVID Web Structure

Long COVID Web operates on a dynamic and inclusive framework, fostering collaboration, knowledge exchange, and a holistic understanding within the community. Rooted in a commitment to diversity, equity, and inclusion, our organizational structure provides a welcoming space for individuals with diverse backgrounds and expertise. Prioritizing open communication, the framework encourages respectful dialogues and idea exchange. With a multidisciplinary approach, we acknowledge the importance of diverse perspectives in navigating the complexities of Long COVID.

Upcoming Events

Long COVID Web Webinar Series:

Updates on Research Activities and Plans for LCW Pillars 3 & 4

Speakers:

Kieran Quinn, MD, PhD

Gary Groot, MD, PhD, FRCSC, FACS

Andrea Gruneir, PhD​

 

Scientific lead for Pillar 3 on health services research, Dr. Kieran Quinn will cover topics related to identifying cases of Long COVID across Canada using algorithms and administrative datasets, measuring variation in service use and outcomes, and rehabilitation pathways.​

 

Pillar 4 scientific leads, Drs. Gary Groot and Andrea Gruneir will cover topics such as establishing a registry of Long COVID patients, estimating the costs of LC from patient, societal, and healthcare perspectives, and identifying strategies for return to work.

Past Events

Long COVID Web Webinar Series: Updates on Research Activities and Plans for LCW Pillars 3 & 4 ​Speakers: Kieran Quinn, MD, PhD Gary Groot, MD, PhD, FRCSC, FACS Andrea Gruneir, PhD Scientific lead for Pillar 3 on health services research, Dr. Kieran Quinn will cover topics related to identifying cases of Long COVID across Canada using algorithms and administrative datasets, measuring variation in service use and outcomes, and rehabilitation pathways. Pillar 4 scientific leads, Drs. Gary Groot and Andrea Gruneir will cover topics such as establishing a registry of Long COVID patients, estimating the costs of LC from patient, societal, and healthcare perspectives, and identifying strategies for return to work.

Long COVID Web Webinar Series: Updates on Research Activities and Plans for LCW Pillars 1 & 2 ​Speakers: Gavin Y Oudit, MD, PhD, FRCPC, FCAHS Emilia Liana Falcone, MD, PhD, FRCPC Grace Lam, MD, MSc, PhD, FRCPC Jill Cameron, PhD, FAHA Summary: Drs. Gavin Oudit and Emilia Falcone will cover topics in the domain of Pillar 1 including biomedical science related to Long COVID such as mechanisms of action, pathophysiology, biomarkers and phenotypes. Drs. Jill Cameron and Grace Lam will cover plans and activities in the domain of Pillar 2, including definitional issues, and clinical studies exploring diagnosis, treatment, and patient registries.

Upcoming Events

Long COVID Web Webinar Series:

Updates on Research Activities and Plans for LCW Pillars 3 & 4

Speakers:

Kieran Quinn, MD, PhD

Gary Groot, MD, PhD, FRCSC, FACS

Andrea Gruneir, PhD​​

November 2024.png

Past Events

October Webinar: October 15, 2024
Updates on Research Activities and Plans for LCW Pillars 3 & 4

September Webinar: September 17, 2024
Highlighting the Current Landscape of Rehabilitation in Long COVID

July Webinar: July 16, 2024
Updates from Long COVID Research in the USA​

June Webinar: June 18, 2024

Long COVID Phenotyping and Biomarkers​

May Webinar: May 21, 2024
Long COVID and Work​​

April Webinar: April 16, 2024
Models of Care for Long COVID​​

March Webinar: March 19, 2024

The REACT Long COVID study (UK): Qualitative, clinical and epidemiological findings to date

February Webinar: February 20, 2024
Emerging Research and Guidance on Long COVID

Factsheets and Checklists

Guidance for Professionals

Finding Support and Getting Help

Additional Reading

Getting Involved in Research

Long COVID and Kids

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