General Objectives Of The Histio Net Project
Author(s): E. Schaefer, Created: 2010/08/31, Reviewed by: I. Astigarraga, J. Donadieu, R. Haupt, M. Minkov, R. Price, last update: 2013/03/24
The Euro-Histio-Net project has been created to co-ordinate efforts to increase knowledge of the disease, improve quantity and quality of knowledge exchanges, produce guidelines and to set up an international data base to assist research efforts. Any newly acquired information will be distributed by this web portal to Histiocytosis professionals, doctors and patients.
Improve Medical Knowledge
The efforts of histiocytosis specialists and clinical studies have improved considerably the understanding and the outcomes of the disease. Nevertheless, the answer to a question often reveals a lot of new aspects and new questions. LCH is still characterised by a mortality of 10% of multisystemic (MS) patients and even 20% of MS patients with risk organ involvement. Morbidity reaches from reactivations and chronicity to lifelong and often severe sequelae like diabetes insipidus, hormone deficiencies and neurodegeneration. The heterogeneity of the disease necessitates the specialisation of the specialists, whereas time and financial restrictions lead to difficulties in exchanging newly acquired knowledge. The Euro-Histio-Net web portal is designed to improve the situation while saving time and efforts through providing an operative instrument of exchange.
Improve Medical Care Of The Patients
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 general guidelines after approval of many involved specialists.
A comprehensive collection of patient data and disease courses in an international data base will help histiocytosis experts to increase the knowledge about the disease and to determine better diagnostic and therapeutic measures. Both medical guidelines and an international data base will help to improve the patients’ treatment. It will also enable the project partners to constantly improve the contents of the Euro-Histio-Net web site. Non-specialised doctors will benefit on access to better information and therefore also be able to improve the patients’ treatment. European patient associations will be asked about all questions that were frequently asked but could not be answered by their treating doctors. So histiocytosis experts will be able to answer these questions and to add them to the FAQ on the Euro-Histio-Net web site. Non-specialised doctors will benefit on these answers as well as histiocytosis patients.