Activities Of The Histio Net Project
Five work packages form the core of the project. They all will be translated to many European languages.
Main instrument of dissemination will be electronic information provided in a web portal. Many persons, institutions, and associations will contribute knowledge to the web portal which will be available in languages spoken all over the world.
Web Data Base
Many different international databases exist, collecting different data on histiocytosis patients. The project tends to merge a lot of this information in an international database which can serve as a common platform for many different groups collecting data on Langerhans cell histiocytosis and associated syndromes.
Meet The Expert
Included in the ECHO web portal a specific session will be designed for the expertise of case including an opportunity to present case reports and to ask questions. A panel of the most fre quently asked questions about LCH and associated syndromes will be listed.
In several European countries patient associations have developed web sites dealing with histiocytic diseases. Euro-Histio-Net aims to coordinate existing resources and to extend this network. The European patient associations will decide jointly about the exact contents of this part of the Euro-Histio-Net web portal.
Several persons and teams worldwide have been producing guidelines for diagnosis, treatment and follow-up of LCH. One of the ambitious efforts of Euro-Histio-Net will be to review these works, to generate a synthesis of this information and to provide guidelines after approval of many involved specialists.
Initial aim of the project was to translate the contents of the web portal to five European languages: English, French, German, Italian and Spanish. These European languages are spoken in large regions of other continents as native language or second language of the daily life (e. g. English with 508 million speakers, Spanish 417 million, German and French 128 million each). In addition, almost 900 million people worldwide are English as foreign language speakers. Meanwhile, also for Arabic, Bulgarian, Dutch, Greek, Polish, Portuguese, Russian and Swedish translators have been found.
Consequently the information provided in the Euro-Histio-Net web portal will be available in many countries all over the world. Many information published on the webpage will be accessible for the public. All information subject to data safety and legal regulations will be provided with restricted access following all applicable legal regulations.