The European Alliance of Associations for Rheumatology (EULAR) has announced the launch of the EULAR Impact of RMDs Survey, an online questionnaire targeted directly at RMD patients. The data collected through this survey will be an important resource for researchers, healthcare professionals, and patients alike, providing a comprehensive database of patient-reported outcomes on their healthcare situation, and how the illness affects their social and occupational lives. By collecting and analysing data from a large number of patients with RMDs on a recurring basis, the survey will provide valuable insights into the burden of disease and help improve the overall care for people living with these conditions.
"EULAR is committed to improving the lives of people with rheumatic diseases," said Dr Anna Molto, chair of the EULAR Research sub-committee of epidemiology and public health and lead of the project. "The launch of this survey is a significant step forward in our efforts to better understand how rheumatic diseases impact the lives of patients across Europe and to identify healthcare gaps and unmet needs." The information gathered through the questionnaire will be used to support research studies, clinical trials, and other research initiatives aimed at improving patient outcomes. It will also serve as a tool for monitoring disease trends and treatment patterns over time, which can help guide clinical practice, policy decisions and advocacy activities."
The EULAR Impact of RMDs Survey is an important resource for the entire rheumatology community. By working together and sharing data, we can make significant progress in the fight against rheumatic diseases."
Professor Annamaria Iagnocco, EULAR President
The project is designed to collect data directly from patients through an online survey. A baseline survey will capture information about the patient's general demographic and sociographic situation, as well as several standardised questions related to their RMD diagnosis and how it impacts their quality of life. Recurring follow-up surveys on a bi-annual basis will allow for a longitudinal observation, as well as additional disease-specific sub-questionnaires as needed.
All information will be de-identified to protect patient privacy and comply with relevant data privacy regulations.
EULAR encourages all patients to participate in the EULAR Impact of RMDs Survey by sharing relevant information and insights into their lives with an RMD.
Patient-derived organoids: Transforming cancer research and personalized medicine