The ERN (European Reference Networks) dedicated to different groups of rare and complex diseases for which the Bambino Gesù Children’s Hospital is a reference center have increased from 15 to 20. Among the pediatric institutes throughout Europe, the Holy See hospital is the one that participates in the largest number of networks.
The European Reference Networks project was launched in 2011 with the aim of establishing a network of centers highly specialized in the research and treatment of rare diseases, to share knowledge and optimize the care provided to patients, going beyond the National boundaries. The basic principle of this “virtual” healthcare model, in fact, is to make skills travel, and not patients.
As from January 2022, the expansion of Networks with the new Centers of Excellence located in all the EU countrie, has broadened the geographical scope of ERNs and, therefore, the possibility for rare patients from all over Europe to access highly specialized care. A World Rare Disease Day is celebrated on 28th February each year.
5 NEW NETWORKS FOR THE BAMBINO GESU’ CHILDREN’S HOSPITAL
There are 24 ERN active in Europe, divided by groups of diseases or conditions, such as pediatric cancers and transplants, neurological, cardiac, respiratory, immunological, bone or dermatological rare diseases. In 2017, when the Council of Member States (composed of representatives of all the European Union and European Economic Space countries) was established, the specialized structures involved in the various ERNs amounted to about 900.
As from 1st January 2022, following a new process of candidate assessment, the Centers of Excellence have increased to over 1,500 (620 new members, most of which in Italy). The Bambino Gesù Children’s Hospital has joined 5 new ERNs that add to the 15 assigned in 2017. The new Hospital Networks concern bone diseases (ERN BOND), hematological diseases (EUROBLOOD), congenital and hereditary anomalies of the digestive and gastrointestinal tracts (ERNICA), liver diseases (ERN RARE-LIVER) and inherited cancer susceptibility syndromes (ERN GENTURIS).
HOW DO ERNs WORK
The selection of the Centers that are part of ERN networks takes into account different characteristics of the candidate hospital structures: patient management and care, organization and management of the center, research activities, skills, information systems and a series of criteria relating to the specific pathologies treated.
Within each network, the specialists of member structures exchange information through the analysis of particular cases carried out remotely on a secure IT platform. In this way it is possible to overcome the geographical distance, and even very rare and complex diseases can be addressed with a multidisciplinary approach that facilitates both diagnosis and treatment.
Each Network brings together experts from a specific group of complex diseases with low or rare prevalence. These are diseases with a threshold not exceeding 5 patients out of 10 thousand, very often severe, chronic and i- n several cases – potentially lethal. Connecting highly specialized healthcare workers allows to overcome the difficulties linked to the lack of skills and the dispersion of small populations of patients throughout the European territory, sometimes in isolated locations where no immediately accessible specialized Centers are available. The goal is to improve clinical results and, consequently, the quality of life of people with rare diseases.
“The assignment of new ERN networks to the Bambino Gesù Children’s Hospital – which is the main pediatric hospital in Europe in terms of number of patients – besides representing a recognition of the work carried out by our Hospital in a complex and difficult sector such as low or very low frequency diseases, reaffirms its propensity to internationalization and its competitiveness with the most prestigious structures operating in the Old Continent” explains Professor Bruno Dallapiccola, Scientific Director of Bambino Gesù.”A further development in the attractiveness of our hospital towards foreign patients is expected through the networks. Although caregiving is the primary role of the networks, the ERNs will offer our researchers the opportunity to increase their contribution to European clinical trials and in general to scientific projects dedicated to rare patients ».