The Prevalence of Bladder Pain Syndrome/Interstitial Cystitis in Italy: The importance of a National Registry
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In the last 30 years, Interstitial Cystitis (IC) diagnostic and etiopathogenetic criteria, as well as its taxonomy, have been strongly debated. Not only internationally, but also within the National Institute of Health (NIH) and especially the National Institute of Diabetes of the Digestive Tract of and Kidney Disease (NIDDK), many changes have occurred.
It is a common opinion that IC epidemiology data are highly inconsistent because of the lack of a shared definition and a valid diagnostic marker.
In 2001, the Italian government recognized this condition as a rare disease, thanks to hard work of Patients’ Organization (Associazione Italiana Cistite interstiziale—AICI). The Higher Institute of Health (ISS) was given the task to put in place a National Registry of Rare Diseases (NRRD) as well as the Regional Registries (RR) within the framework of a very complex network consisting of Reference Centers and experts, to collect quality data. The RR are the NRRD infrastructure, an important tool to carry out the network’s tracking, the rare diseases surveillance and the data flow analysis where patients receive diagnose and treatments. It will be analyzed the network, NRRD and the data performed in the last 15 years (Courtesy of ISS).
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