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EUSTAR actively encourages and supports the development and conducting of clinical and basic science research on systemic sclerosis. At-a-glance information on all current trials and projects hosted by EUSTAR is provided below.
VEDOSS Project News
- The DeSScipher Project
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TUSCANY FIRST VEDOSS DAYS DEDICATED TO THE Very Early Diagnosis Of Systemic Sclerosis PROJECT
In early September of 2010 started the announced days dedicated to the project VEDOSS (Very Early Diagnosis Of Systemic Sclerosis) presented during the first World Congress on Systemic Sclerosis held in Florence in February 2010.
The doctors at this meeting agreed on the importance of very early diagnosis of the disease that can, in many cases, prevent and slow down, with appropriate treatment, the course of the disease. The projects will provide, through the Videocapillaroscopy, a wide-ranging non-invasive screening, to identify early signs of a possible development of the disease.
The Videocapillaroscopy can give immediate results: the signals which show Raynaud’s phenomenon or swollen fingers, will be followed by further investigations on the presence of antinuclear antibodies.
The Vedoss days were coordinated by the doctors of the Reference Center in Florence that organized 4 days of free screenings in 4 different towns of Tuscany (Florence, Montecatini Terme, Pescia and Pistoia). The initiative has been supported by the University Hospital of Florence and even from different patient groups and association, like ASSMaF, and found wide acceptance and enthusiasm. The visits took place on a motor home, equipped as a clinic, which made stops in the central squares of the places mentioned above.
The volunteers of the patient association have worked together with the physicians giving a fundamental contribution to the success of the event. They arranged workstations, equipped with a desk for the first contacts with the public, distributed informational material about the disease and supported the work of doctors.
All the days were preceded by press releases, articles from local newspapers, radio and television interviews that informed other medical colleagues in order to help them in the diagnosis of that patients who already presented the typical “cold hands”. The data collected during these Vedoss days “in the streets” were immediately recorded after the single examination and those people, who showed suspicious signs related to the disease, were invited to further detailed laboratory investigations. Many people came and wanted to get screened and a large number of leaflets about the disease were distributed to the participants. The creation of a dedicated Vedoss Center at the University Hospital Careggi in Florence allows the physicians to follow patients through Videocapillaroscopy screening and other investigations in the early stages of the disease.
The DeSScipher Project
DeSScipher is the acronym for ”to decipher the optimal management of Systemic Sclerosis”. It was an international EU-funded research project, and in fact currently the largest research project ever for Systemic sclerosis. It mainly consists of five observational, non-interventional studies, conducted over a period of at least 3 years (ended in 2013). The aim of this project is to improve the treatment strategies for Systemic Sclerosis, and thus to improve the quality of everyday life for patients living with their disease in the future. Moreover, DeSScipher aims to improve the education of patients and physicians, and to achieve a better care for patients by the development of accepted evidence-based clinical guidelines