FISiM registry is a project started as a Piedmontese Group for Myelodysplastic Syndrome (MDS Piedmont), which was born in 1999 on a voluntary basis with scientific intentions. The project was joined until 2010 exclusively by all the hospital and university divisions of Piedmont Hematology and most of the Internal Medicine Division of the region concerned with the management of hematologic patients. Since 2011, besides the centers operating in Piedmont, an Italian network of the MDS register has been established, including all the Italian regions that have requested the membership at the moment (Basilicata, Calabria, Campania, Emilia Romagna, Friuli Venezia Giulia, Liguria, Marche , Puglia, Sardinia, Tuscany, Umbria and Veneto).
This project consists in collecting cases of myelodysplasia through the use of an IT platform managed by Turin Epidemiology Center. For each patient who gives the consent, there are included information about the diagnosis, therapy to which the patient is subjected and the course of the disease. The information introduced is used and eventually disseminated for information purposes (such as national and international conferences, group meetings) in aggregate way, the data are analyzed together with all those ofother patients in anonymous form, in accordance with the law.
This project is the beating heart of FISiM, it is the asset around which is built the entire research activity that every day is gone ahead.
Now there are almost 5000 cases included in the Registry, with a steady increase in the participation of the regions and centers involved.
Myelodysplasia is a rare disease and to study it as best as possible, it is necessary to gather as much information as possible that will be analyzed together to find new care and to come up with new scientific insights to carry on the research. It is therefore easily imaginable because FISiM identifies itself in this project.
The larger the Registry will be, the greater will be the possibility of obtaining scientifically solid data in support of what is initially only the scientific hypothesis of the researcher.
To find out which centers are active for FISiM Registry in your region, click here