Patient support for primary immunodeficiency with hypogammaglobulinemia and intravenous immunoglobulin substitution: result of a national survey

La Presse médicale
Felipe SuarezOlivier Hermine

Abstract

Primary Immunodeficiencies (PIDs) represent a heterogeneous group of rare diseases characterized by increased susceptibility to infections, often accompanied by a diverse immuno-pathological manifestations (autoimmunity, inflammation, benign or malignant lymphoproliferative disorders). The precise prevalence of PIDs in France is not known but is estimated to represent approximately 5 000 patients. To better understand the situation of PID in France and gain an insight as to the care of these patients, we conducted a national survey by sending a questionnaire to physicians potentially involved in the care of PID patients. The majority of physicians follow only a few PID patients but the diagnostic and therapeutic attitudes are generally satisfactory. These results underscore the need to coordinate the care of PID patients in France as part of national networks. The approach adopted by the CEREDIH (French reference center for hereditary immune deficiencies) and DEF-I french national cohort identifying patients with DIP, will optimize the management of PID by defining diagnostic and therapeutic guidelines. In addition, these networks will provide valuable data regarding the incidence of PID and their complications.

References

Jul 22, 1999·Clinical Immunology : the Official Journal of the Clinical Immunology Society·C Cunningham-Rundles, C Bodian
Dec 22, 1999·Clinical Immunology : the Official Journal of the Clinical Immunology Society·M E ConleyA Etzioni
Dec 31, 2003·Nature Immunology·Alain Fischer
Apr 4, 2006·The Journal of Allergy and Clinical Immunology·Jordan S OrangeUNKNOWN Primary Immunodeficiency Committee of the American Academy of Allergy, Asthma and Immunology
Apr 19, 2008·Clinical Infectious Diseases : an Official Publication of the Infectious Diseases Society of America·Eric OksenhendlerUNKNOWN DEFI Study Group
Aug 12, 2008·Lancet·Miguel A ParkRoshini S Abraham

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