University of Birmingham, UK announces ‘all-language capability’ for tool to accelerate long-COVID research |

BIRMINGHAM, England, December 8, 2022 /PRNewswire/ — A valid Symptom Burden Questionnaire™ that will help medical researchers unravel the complexities of Long COVID and develop or test new treatments is now available for translation into hundreds of languages, with support for inclusion on digital platforms, through a partnership agreement between the University of BirminghamUK and Mapi Research Trust.

It is currently believed that more than 100 million people worldwide are affected by Long COVID. However, attempts to study this complex condition have been smothered by a wide and variable constellation of symptoms that can affect many organs in the body – and patients had told researchers that existing questionnaires did not fully capture the extent of their symptoms.

The Symptom Burden Questionnaire™ for Long COVID (SBQ™-LC ) was developed by a team from University of Birminghamit is Center for Patient-Reported Outcomes Research to meet this challenge.

Designed according to international best practices and regulatory guidelines, the SBQ™-LC uses modern methods to capture symptoms from 16 domains (symptom categories) and a scale that measures the impact of symptoms on daily life, and has already been approved for use in more than 50 countries worldwide.

While the most well-known Long COVID symptoms are fatigue and brain fog, up-to-date research shows that the list of symptoms also includes nausea and vomiting, incontinence, erectile dysfunction and hair loss, and the World Health Organization recently urged countries to accelerate research on recovery and rehabilitation.

from Birmingham partnership with Mapi Research Trust means that the questionnaire can be electronically migrated, translated and validated cross-culturally through rigorous linguistic validation processes to support international research efforts to better understand the disease, identify treatment options and improve the clinical management of people affected by it worldwide.

Caroline Anfray, Director of Collaborations with Clinical Outcome Assessment (COA) Developers and Copyright Holders at Mapi Research Trust, explains: “Additional high-quality materials for COAs ensure consistency between versions and translations. Reliable guidance for use is essential to ensure the integrity of COAs and Mapi Research Trust is committed to the highest standards in clinical trial resources, and our mission on behalf of the University of Birmingham will ensure that the SBQ™-LC is used consistently and appropriately by research teams across all languages, countries and technology.”

Doctor Sarah Hughesresearcher at from Birmingham Institute of Applied Health Research, led the project team that designed and validated the SBQ™-LC. She said: “The questionnaire is designed for comprehensive symptom capture, without being burdensome for patients who can complete it either on paper or via a digital app.”

The complete list of SBQ™-LC domains includes: breathing, pain, circulation, fatigue, memory, thinking and communication, movement, sleep, ears, nose and throat, stomach and digestion, muscles and joints, mental health and well-being, skin and hair, eyes, reproductive health (male/female) and other symptoms.

Dr Hughes added: “Although the underlying causes of Long COVID are not yet clear, it remains important to accurately and reliably record the most complete list of symptoms, so that we can create sets of patient experience data that can be compared or consolidated.”

“The SBQ provides a modular approach, with the option to collect full data, or only data for specific groups of symptoms. Converting raw scores to a common metric (0-100) allows easy comparison of scores across the different symptom domains, provides a real picture of disease burden and its impact on daily life, and its scores can be used to support regulatory decisions regarding the approval of new therapies for Long COVID.

Clinicians and academic researchers can apply for a non-commercial license here. Access to translations and electronic versions: companies or researchers interested in accessing existing translations of the SBQ™-LC and/or developing it in a new language must submit a request to Mapi Research Trust via the SBQ™-LC webpage on the ePROVIDE platform.

Doctor Sarah Hughes speaks at the BMJ Research Forum Driving the real impact of health research Friday 9^e December at 11:30 a.m. (GMT). The in-person event will take place at BMA House in LondonUK

The University of Birmingham is ranked among the top 100 global institutions. His work brings people around the world to birminghamcomprising researchers, teachers and more than 6,500 international students from more than 150 countries. University of Birmingham Company helps researchers turn their ideas into new services, products and businesses that meet real-world needs. follow us on LinkedIn.

The Center for Patient-Reported Outcomes Research has led international initiatives to optimize the use of patient-reported outcomes in clinical trials and routine care, improve service delivery, improve patient care and outcomes, and ensure that the perspective of the patient is at the heart of health research and decision-making.

Mapi Research Trust is a non-profit organization facilitating the exchange and access to information in the field of clinical outcome assessments (COA) for the entire scientific community, academics, pharmaceutical companies, healthcare organizations health and health authorities. With more than 30 years of experience in the field of COAs and with the online platform ePROVIDE™ which includes the PROQOLID™, PROLABELS™ and PROINSIGHT™ databases, Mapi Research Trust is the primary source of COA information.

Mapi Research Trust is the largest provider of COA licenses and the most trusted name in the distribution of COA instruments representing exclusively over 700 COAs.

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