French Gaucher registry

PubMed, the Internet portal of biomedical and life sciences literature, indexed an interesting article, entitled “The French ‘observatoire’ on Gaucher’s disease.” (Eur J Intern Med. 2006 Nov;17 Suppl:S6-8). Author is Jaussaud R, from the Department of Internal Medicine, Reims, France. Registries of patients with rare diseases are important and represent valuable sources of information on epidemiology, natural history of the disease, treatment response and medical practices. The French ‘observatoire’ on Gaucher’s disease has both an epidemiological and educational objective: It will describe a large population of adult patients with special attention to complications and quality of life assessment. All adult patients with a confirmed diagnosis of Gaucher’s disease will be enrolled at the time of their regular visit to the investigational centre. Collection will be as comprehensive as possible, covering the classical parameters of Gaucher’s disease with patients’ complaints, clinical abnormalities, imaging and biological assessments and concomitant medications. To access the full abstract of the article, click here.