LCH EXPERTS from around the world will attend the next meeting of Euro-Histio-Net in March.
H R Trust Trustee Richard Price will join clinicians, scientists and members of patient groups at the meeting in Genoa, Italy.
The aim of the two-day event is to review work that has been achieved during the last 12 months as well as consider tasks for the next year.
During the last 12 months, guidelines for the diagnosis, clinical work-up and treatment of paediatric LCH patients for those not formally enrolled in a study have been approved by most members of the working group and will soon be published.
Guidelines for adults are also to be drawn up and these will be overseen by Michael Girschikofsky of the Austrian Working Group for Histiocytic Diseases in Adults.
In addition, guidelines have been produced for tissue banking in LCH and work on the new web portal is proceeding well. The final version is due to be published shortly at www.eurohistio.net
A specific criteria for the appointment of experts in LCH has also been produced as well as a list of frequently asked questions for patients and professionals which will be included on the web.
Project Manager, Eva Schaefer, said: “At the end of the second year of our European project for Langerhan’s Cell Histiocytosis and associated syndromes, we have achieved a lot of important goals.
“The last year of our project will be dedicated to several further important tasks and in order to achieve them, we are organising this meeting.”
The Euro-Histio-Net project was established to increase the knowledge of Langerhan’s Cell Histiocytosis and associated syndromes with the aim of improving patient care.
The projects main objectives are to improve the quantity and quality of knowledge exchange, produce guidelines and set up an international data base. A web portal has also been devised to make any newly acquired information available for professionals, doctors and patients.
It is hoped that the comprehensive collection of patient data and disease courses in an international data base will help histiocytosis experts increase their knowledge about the disease, determine better diagnostic and therapeutic measures with a view to improving patients’ treatment.
It will also mean that non-specialised doctors will be able to access better information about the disease.