The European Alliance of Associations for Rheumatology (EULAR) has introduced the launch of the EULAR Influence of RMDs Survey, an internet questionnaire focused straight at RMD sufferers. The information collected by means of this survey can be an necessary useful resource for researchers, healthcare professionals, and sufferers alike, offering a complete database of patient-reported outcomes on their healthcare state of affairs, and the way the sickness impacts their social and occupational lives. By gathering and analysing knowledge from a lot of sufferers with RMDs on a recurring foundation, the survey will present precious insights into the burden of illness and assist enhance the general take care of individuals residing with these situations.
“EULAR is dedicated to bettering the lives of individuals with rheumatic illnesses,” mentioned Dr Anna Molto, chair of the EULAR Analysis sub-committee of epidemiology and public well being and lead of the undertaking. “The launch of this survey is a big step ahead in our efforts to raised perceive how rheumatic illnesses impression the lives of sufferers throughout Europe and to determine healthcare gaps and unmet wants.” The data gathered by means of the questionnaire can be used to help analysis research, medical trials, and different analysis initiatives aimed toward bettering affected person outcomes. It’ll additionally function a instrument for monitoring illness traits and remedy patterns over time, which may help information medical observe, coverage selections and advocacy actions.”
The EULAR Influence of RMDs Survey is a vital useful resource for your entire rheumatology group. By working collectively and sharing knowledge, we will make vital progress within the battle towards rheumatic illnesses.”
Professor Annamaria Iagnocco, EULAR President
The undertaking is designed to gather knowledge straight from sufferers by means of an internet survey. A baseline survey will seize details about the affected person’s normal demographic and sociographic state of affairs, in addition to a number of standardised questions associated to their RMD prognosis and the way it impacts their high quality of life. Recurring follow-up surveys on a bi-annual foundation will enable for a longitudinal remark, in addition to extra disease-specific sub-questionnaires as wanted.
All data can be de-identified to guard affected person privateness and adjust to related knowledge privateness rules.
EULAR encourages all sufferers to take part within the EULAR Influence of RMDs Survey by sharing related data and insights into their lives with an RMD.
