Patients who have been hospitalized with COVID-19 have an approximately one in five chance of having lingering brain fog, shortness of breath, malaise or a host of other symptomatology related to having had the virus after four weeks, and one in ten after 12 weeks (WHO Policy Brief 39). Large numbers of COVID-19 patients who were not hospitalized and had mild to moderate symptoms of the virus are also facing prolonged health issues due to long-haul COVID.
The World Health Organization’s clinical case definition of October 6, 2021 states, “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually three months from the onset of COVID-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. Symptoms may be new-onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.”
More research has shown that “its development and severity do not seem to correlate with the extent and nature of symptoms during the acute phase of the infection” (Greenhalgh et al., 2020), although it is more common in hospitalized patients (Sudre et al., 2020). Children also have experienced multi-symptom post-COVID disease (WHO Policy Brief 39). The actual number of patients affected by long-haul COVID has yet to be determined.
In this webinar, representatives from patient advocacy groups (PAGs), including one focused on pediatric patients, will discuss what patients and their families want and need from clinical trials and how the research community can best connect them to studies focused on long-haul COVID in this cross-therapeutic environment. These PAG leaders will also provide insight on how patient diversity can be increased in these studies.
Register for this webinar to understand how best to approach patients and their families for research studies when they may be very tired of the healthcare system and the unknowns of long-haul COVID. Additionally, the expert speakers will explore several ways in which long-haul patients are being connected to clinical research studies presently and discuss improvements that may be needed.
Key topics will include:
- A better understanding of the patient/family perspective, including their concerns when enrolling for a research study, and the importance of connecting cross-therapeutically for long-haul COVID-19 research
- How PAGs are helping to ensure diversity in the patients enrolling in long-haul COVID-19 studies, from ethnic groups to age groups
- How PAGs are helping patients/families sift through the noise and acquire value-added information, and what the research community can do to assist in this effort
- Suggestions for recruiting and retaining patients in clinical research when patients/families are challenged by the healthcare system and the unknowns of long-haul COVID
Speakers
Gina Assaf, Co-Founder, Patient-Led Research Collaborative
Gina Assaf is a co-founder and co-lead on PLRC (Patient-Led Research Collaborative) and a board member on Body Politic Long COVID support group. She is also a leader, design strategist and researcher for digital solutions for the global aid and humanitarian sector. Gina leverages human-centered design and participatory research methods in her work. She initiated the first known research on long COVID after contracting it in March of 2020 and having long-term symptoms post-infection.
Since then, Gina has co-published several reports on long COVID and patient-led research, including in the journal E-Clinical Medicine by the Lancet, and is involved in advocacy and leadership initiatives for both long COVID and patient-led research work. Gina is also the co-founder and managing director of Olive Branch International Digital Solutions. She has a Bachelor’s in Computer Science from San Diego State University and a Master’s in Human-Computer Interaction from Carnegie Mellon University.
Message Presenter
Chimére L. Smith, Patient Advocate, Body Politic, and BIPOC Women Long Covid “Long Hauler” Support Group
Chimere L. Smith is a writer and thought leader who has appeared on MSNBC Live with Craig Melvin, The Washington Post, Medium and on PBS NewsHour. She has been consistently coined as a “passionate” patient-led advocate after attracting the attention of local politicians, doctors and hospital administration to receive life-saving care as she battled COVID-19.
Since June 2020, she has used her social media platforms, engagement in grass-root COVID-19 support groups (notably Body Politic and BIPOC Women Long Covid “Long Hauler” Support Group) and strong media presence to raise awareness about the importance of Black voices in conversations on the prevention, treatment and research of Long COVID in urban communities. In December 2020, she was a featured patient-led panelist at the National Institute of Allergy and Infectious Diseases (NIAID) workshop on Post-Acute COVID. Chimére is an independent member of The Long COVID Alliance and a recently appointed board member of Body Politic.
Message Presenter
Sammie Mcfarland, Founder and CEO, Long COVID Kids
Sammie Mcfarland’s passion for wellbeing stems from her life-long commitment to proactive health and empowering women to look after and understand their bodies. Sammie overcame adversity, and, despite being an introvert, developed the grit to grow a successful business in Dorset, UK and online. Her commitment to women’s health led her to be awarded both Wellbeing Coach of the Year and the Successful Women in Business Award in 2019 by Burrell Education & Successful Women in Business.
In March 2020, Sammie and her daughter both had a “mild” case of COVID-19 and went on to develop debilitating long COVID. Fueled by her daughter’s experiences, Sammie launched Long COVID Kids, providing grassroots support and connection for families, children and young people living with long COVID. Long COVID Kids is the first UK-based, global children’s charity for long COVID focusing on education, prevention, research and support.
Message Presenter
Talley Mitchell, Head of Patient Recruitment and Engagement, Labcorp Drug Development
Talley Mitchell has more than 20 years of research experience and came to Labcorp Drug Development in 2012 as a clinical project manager. She is a graduate of the Labcorp Drug Development Rotational Program, where she held various roles within Clinical Development and Commercialization Services and gained broad drug development experience. For the past four years, Talley has focused on utilizing Labcorp data and patient touchpoints to create innovative and differentiating patient recruitment strategies aimed at making clinical trials more accessible for all. Talley has a BA in psychology from Bethel University and an MS in biomedical sciences from Rosalind Franklin University of Medicine and Science.
Message Presenter
(Moderator) Sonia Preston, Senior Director in Operational Strategy and Planning, Labcorp Drug Development
Sonia Preston works with pharmaceutical and biotech companies in planning research studies to include optimal patient recruitment and retention. Sonia has worked across the industry in university and VA settings as a study coordinator and in project management for both pharma and CROs with more than 25 years in research focused on operational delivery. Sonia was responsible for COVID studies during the early days of the pandemic and has also worked with PAGs in the conduct of clinical trials in oncology and renal rare disease research.
Message PresenterWho Should Attend?
This webinar will benefit those involved in long-haul COVID research, with relevant job titles including:
- Chief Medical Officer
- Chief Executive Officer
- Senior Medical Director
- Medical Director
- Clinical Development Director
- Research and Development Director
- Operational Director
- Senior Operational Director
- Clinical Director
- Senior Clinical Director
- Research Director
What You Will Learn
Join this webinar to learn:
- What long-haul COVID patients and parents of children affected by prolonged COVID health issues need and want from clinical research
- The concerns from a patient/family perspective when enrolling for a research study
- How PAGs are connecting patients to clinical research
- The various ways in which patients can be recruited for long-haul COVID studies and what we can still improve
Xtalks Partner
Labcorp
Labcorp is a leading global life sciences company that provides vital information to help doctors, hospitals, pharmaceutical companies, researchers and patients make clear and confident decisions. Through our unparalleled diagnostics and drug development capabilities, we provide insights and accelerate innovations to improve health and improve lives. Learn more about Labcorp at www.Labcorp.com or follow us on LinkedIn and Twitter @Labcorp.
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