It is the third most widespread rheumatological disease in Italy, represents 12-20% of outpatient diagnoses, affects about 2 million Italians (2.2% of the general population), especially women of working age, but only one in three people know what fibromyalgia. The causes of the disease are not known, furthermore there are no therapies that can effectively act on the symptoms, first of all chronic widespread pain that has lasted for at least 3 months. But research does not give up, on the contrary. And it is for this reason that the Italian Society of Rheumatology (Sir), with the patronage and scientific and institutional partnership of the Ministry of Health, in 2019 it decided to establish the first national registry on fibromyalgia.
“The one on fibromyalgia represents one of the first records relating to chronic pain diseases in Europe and in the world – he says Fausto Salaffi, associate professor of Rheumatology at the Polytechnic University of Marche and national head of the Fibromyalgia Registry -. It is about a strategic project, which allows an observational and prospective collection of clinical and clinimetric data of fibromyalgia patients throughout the national territory. The project aims to create a tool that allows research in the field of fibromyalgia and favors the development of precision medicine in this area “.
“Thanks to the register – adds Salaffi – it is today it is possible to define the prevalence of the disease, measure the degree of severity, improve knowledge of the natural history of the disease, define the time interval between the onset of symptoms and diagnosis, monitor and update the diagnostic-therapeutic-assistance path ( Pdta) and evaluate the outcomes and socio / economic impact. The registry analyzes the peculiar aspects of the disease and the impact that pain and all other symptoms have on the lives of patients and to do research to improve the therapeutic approach which, let’s not forget, is a multimodal: there is no drug nor a specific therapeutic strategy for this extremely frequent pathology, complex from a clinical point of view but also highly disabling “.
For the first time “the patient is in the center for a new, ambitious and complex project – underlines Salaffi, who is the author and / or co-author of over 70 scientific papers on the Fibromyalgia Syndrome – which sees the active participation of 42 Rheumatology Centers in Italy. This initiative has made it possible to obtain what is, to date, the largest European series of patients suffering from fibromyalgia. The epidemiological and clinical data obtained will expand the knowledge of the disease, in the hope of improve the diagnostic / therapeutic process and encourage an approach to personalized therapies”.
The data is collected through an online platform, which in compliance with the highest standards of safety and ethical-legal operational management, allows you to enter the main personal data, clinical information relating to the quality of life and the therapeutic regime of patients. These data are collected in an orderly fashion and kept constantly updated. “The platform – concludes Salaffi – has been designed and built to allow its use exclusively on the “network”, through a secure internet connection (the availability of internet access is delegated to the Centers adhering to the Registry users of the application) through a dedicated domain, from which the Registry services are accessible to users, previously authorized by SIR, through the presentation of specific credentials issued by the platform administrators “.
Salaffi is among the authors of the publications “The Italian Fibromyalgia Registry: a new way of using routine real-world data concerning patient-reported disease status in healthcare research on the establishment of the Registry on fibromyalgia and on the definition of the severity levels of the disease”. and clinical practice “(Clinical and Experimental Rheumatology) and Definition of fibromyalgia severity: findings from a cross-sectional survey of 2339 Italian patients” (Rheumatology – Oxford).