About this Webportal
Author(s): E. Schaefer, Created: 2010/04/29, Reviewed by: I. Astigarraga, J. Donadieu, R. Haupt, M. Minkov, R. Price, last update: 2011/09/02
Introduction
Following the incidence, each year 1400-2500 children and adults in the European Union develop Langerhans Cell Histiocytosis (LCH) and associated syndromes. In several cases, patients have to wait many weeks, months or even years until diagnosis. Once confirmed, patients and treating physicians have to deal with histiocytosis, searching for scientifically approved information concerning adequate diagnosis, therapy and follow-up. They should be enabled to easily find reliable information and to obtain online expert support. The Histio Net project, which has received European funding, is supported by 30 partners with high experience in LCH and associated syndromes. Among other objectives, it tends to create an online expert support.
Methodology
The three core elements of the Histio Net online expert support have been defined by a team of histiocytosis experts:
Frequently Asked Questions:
For the development of FAQ lists, many different websites were reviewed to find good examples and to decide on the optimum structure for the lists which will be separate for professionals and for patients. The FAQ list for professionals was elaborated in collaboration of histiocytosis experts and non-specialised scientists without special knowledge concerning histiocytic disorders. Different chapters were built for LCH, HLH and Rare Histiocytoses. The list will initially be simple and will progressively become more complex. The FAQ list for patients/parents and the public was elaborated in collaboration of histiocytosis experts and the Spanish patient association against histiocytosis ACHE.
Frequently asked questions for patients, families and the public
Maps of Experts:
For the creation of maps of experts, many different websites were reviewed to find good examples for mapping experts. The solution finally chosen is matched to the special needs of histiocytic disorders. All collaborating partners will be asked to compile lists of their national histiocytosis networks. Following the validation of the expertise of the listed centers, national maps of experts will be created, divided into centers of reference with high knowledge about LCH and/or associated syndromes and centers which are experienced in treating these diseases.
Maps of Experts in Langerhans Cell Histiocytosis and associated syndromes
On these pages you will find maps showing centres of expertise and some explanation about how we define expertise.
Contact Forms:
Contact forms will be created separately for physicians and for patients. The contact forms for physicians will allow them to describe a case by choosing from drop-down lists and adding specific information. They will then be sent automatically to different specialists who should be involved. The contact forms for patients will allow them to choose from lists the information they are looking for. In case that a contact to a patient group is desired, the form will be sent automatically to the groups of the respective language.