Examine our healthcare system in order to improve the health and quality of life of patients
We study the frequency and characteristics of certain diseases among the population, as well as the care initiatives adopted to treat them. We are focusing on chronic diseases such as diabetes and pay special attention to rare diseases such as cystic fibrosis. We develop new surveillance systems, such as registries, which allow us to monitor the evolution of the diseases and the care offered to the patients. We also compare the results achieved by different care providers, in order to identify sources of added value. We propose concrete actions to foster the quality of healthcare, and so improve the health and the quality of life of patients.
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We have developed various registries for specific (chronic) diseases, with recent data flow development according to the e-Health plan (available in Dutch and French). To enrich the registries, we cross-reference several data sources: administrative data, anonymous data from the medical files of patients, data provided by various healthcare networks, etc. These Belgian registers are used by experts for research purposes and are incorporated into European and international databases.
In practice, for example, certain data pertaining to patients with cystic fibrosis allows us to identify the factors that are likely to affect the lung function decline, such as the use of antibiotics. In the fight against diabetes, we assess to what extent the care programmes put in place by the health authorities improve the health of patients. In the future, cross-referencing of data will enable the follow-up of the care provided to diabetes patients throughout their life, as from the diagnosis. This will contribute to slowing down the occurrence of complications in patients, such as blindness, renal insufficiency, etc.
Besides a patient registry for rare diseases, we also make an overview of existing Belgian specialised care services for and research activities on rare diseases, bringing the information together in databases, such as Orphanet.