Long COVID, also known as Post-COVID Condition, affects an estimated 65 million people globally. It is a complex condition characterized by over 200 reported symptoms that vary among individuals. Understanding the underlying mechanisms and developing diagnostic tools, including biomarkers, are ongoing areas of research. In the absence of definitive diagnostic tools, symptom-led investigations remain crucial for diagnosing and managing Long COVID patients and assessing new treatments. The Symptom Burden Questionnaire™ for Long COVID (SBQ™-LC) is a patient-reported outcome (PRO) specifically designed to comprehensively measure the severity and impact of Long COVID symptoms in adults. It has been licensed for use in research studies and clinical practice in more than 60 countries worldwide.
This webinar will discuss the importance of patient-reported outcomes for new conditions such as Long COVID, where understanding of the condition is evolving in real time. We will describe the development and validation of the SBQ™-LC in the context of a major clinical study and share potential applications of the instrument. In addition, we will discuss learnings from the pandemic and future considerations for patient-reported outcomes in the context of complex, multi-system conditions and multi-morbidity.
Join this webinar to learn more about patient-reported outcomes and how the Symptom Burden Questionnaire™ is helping to ensure the patient perspective is at the center of assessment and management of Long COVID.
Professor Melanie Calvert, PhD, Professor of Outcomes Methodology and Director, Centre for Patient Reported Outcome Research, University of Birmingham
Professor Melanie Calvert, PhD, is Professor of Outcomes Methodology at the University of Birmingham UK. She is Director of Birmingham Health Partners Centre for Regulatory Science and Innovation and Director of the Centre for Patient Reported Outcomes Research which aims to optimize the use of patient-reported outcomes (PROs) in clinical trials and routine care, to improve service delivery, enhance patient care and outcomes and ensure that the patient perspective is at the heart of health research and healthcare decision-making.
She is the cross-cutting theme lead for PROs research within National Institute for Health and Care Research (NIHR) infrastructure including the NIHR Birmingham Biomedical Research Centre, NIHR Blood and Transplant Research Unit in Precision and Cellular Therapeutics and NIHR Applied Research Collaboration West Midlands. She is a member of the National Research Ethics Advisory Panel and is a NIHR Senior Investigator. She co-led the NIHR/UKRI funded Therapies for Long COVID Study.
Dr. Sarah Hughes, PhD, MRCSLT, Research Fellow, Centre for Patient Reported Outcome Research, University of Birmingham
Dr. Sarah Hughes is a Research Fellow at the Centre for Patient Reported Outcomes Research (CPROR) at the University of Birmingham and an Honorary Research Fellow at Swansea University where she is also a James Callaghan Scholar. With a background as a qualified speech and language therapist and over 20 years of clinical experience in the UK’s National Health Service, Dr. Hughes brings a wealth of expertise to her role. Dr. Hughes joined the University of Birmingham in 2020 and focuses her research on optimizing patient-reported outcomes (PROs) for long-term conditions.
Her specific interests lie in the areas of hearing loss, cell therapies, multi-morbidity and Long COVID. Dr. Hughes led the development of the Symptom Burden Questionnaire for Long COVID as a co-investigator for the NIHR/UKRI-funded Therapies for Long COVID Study and she is currently leading a further NIHR-funded study to adapt and validate the Symptom Burden Questionnaire for use with young people aged 11-17 years. With her clinical background as a driving force, Dr. Hughes strives in her research to ensure that care is informed by patients’ lived experience.
Tatiana Canard, Manager, Author Collaboration Unit, Mapi Research Trust
After obtaining her university degree in foreign languages in Moldova, Tatiana Canard continued her studies and professional career in France, working in the pharmaceutical industry on the manufacturing side for almost 10 years. She has extensive client services experience and has also managed suppliers as a Buyer. In 2019, Tatiana obtained her master’s degree in business development and key accounts at Neoma Business School (Paris).
In 2021, Tatiana joined the Author Collaboration Unit at Mapi Research Trust to establish new collaborations with the authors and/or copyright holders of clinical outcome assessments and assists them with the daily management of their questionnaires. Since 2023, Tatiana has led the team of account managers and account executives within the Author Collaboration Unit.
Who Should Attend?
Patients and members of the public, healthcare professionals, academic researchers and professionals from pharma, biotech and medtech companies involved in:
- Clinical Trials (early and late phase)
- Healthcare Delivery
- Drug Development
- Regulatory Affairs
What You Will Learn
Attendees will gain insights into:
- The role of lived experience in patient-reported outcome (PRO) development
- Potential applications and benefits of using PROs to measure symptom burden in Long COVID
- The benefits of undertaking PRO development in a digital setting
- A description of the Symptom Burden Questionnaire, its administration and scoring
Mapi Research Trust
Mapi Research Trust is a non-profit organization that facilitates access to Clinical Outcome Assessments (COAs) for the entire scientific community. With more than 30 years of experience in the field of COAs and with the online platform ePROVIDE™, which includes databases on COAs (PROQOLID™), claims (PROLABELS™) and guidance (PROINSIGHT™), Mapi Research Trust is the pre-eminent source of information on COAs.
Exclusive distributor of over 700 COAs, Mapi Research Trust is the most trusted name in the distribution of COA instruments.