General Purpose Of The International Histio Net Data Base
The critical mass of patients is a condition for increasing scientific and medical knowledge on Langerhans Cell histiocytosis and associated syndromes. The identification of unknown aetiologies will help the management of complex and rare disease situations, on condition that enough patients can be enrolled in clinical and epidemiological trials. The integration of data of national databases as far as possible will help to improve research. Even if most patients initially will only be registered with a small set of mandatory data, an “inventory” of patients will be generated. In case of a defined epidemiological study or a clinical trial which implements an additional need of data, adequate patients can be re-contacted with the aid of the data controllers who have contributed the data to the Histio Net data base.
The international data base for Langherhans Cell histiocytosis and associated syndromes is expected to have several benefits for patients and doctors all over Europe and beyond:
In the short term (from 2011) it will provide easy access to an effective and evidence-based data base for histiocytosis and associated syndromes, it will help to increase cost-efficiency and to save time by providing pragmatic IT technology, and it will allow for using synergies.
In the long term (5 years and more), first and most important, pooled data can improve the incentives for research. In addition, comparability of data on a European level can help to drive improvements through benchmarking and exchanging good practice based on health indicators. In consequence, it can help to improve quality of information, care, and services and it can make earlier diagnosis possible. The creation of international and/or multidisciplinary teams of experts can become easier. Publishing the gained outcomes in the form of Frequently Asked Questions and Medical Guidelines as well as using the knowledge in Meet the Expert Sessions will improve the access to care. This will not be restricted to European countries but will be available worldwide where patients or doctors speak a European language.