An International registry on Autoinflammatory diseases: the Eurofever experience

Abstract

ObjectiveTo report on the demographic data from the fi rst 18 months of enrollment to an international registry on autoinfl ammatory diseases in the context of the Eurofever project. Methods A web-based registry collecting baseline and clinical information on autoinfl ammatory diseases and related conditions is available in the member area of the PRINTO web-site. Anonymised data were collected with standardised forms.

Autoinflammatory syndromes as causes of fever of unknown origin

“…Interleukin (IL)-1 blockade appears the most effective treatment and is now the maintenance treatment of choice. 1 …”

“…SAIDs can present at almost any age, although many onset in early childhood, 10% of patients will have their fi rst symptoms after the age of 30 years. 1 Although these are extremely rare conditions, they are of disproportionate importance because untreated they can result in prolonged invasive investigations and unnecessary surgery, as well as severely impaired quality of life. Importantly, recent advances have radically improved the ability to diagnose and treat them.…”

Autouždegiminiai Sindromai: Sudėtinga Diagnostika Ir Gydymas

“…Kadangi AUS yra labai reti bei galimas jų įvairus fenotipinis pasireiškimas, tai uždelsta ir sudėtinga diagnostika yra normalus reiškinys. Net kai diagnozuojamas kuris nors iš AUS, sunku pacientams ar tėvams atsakyti į po to iškylančius klausimus apie geriausio gydymo galimybes ir ilgalaikę prognozę [6].…”

Enfermedades autoinflamatorias en pediatría

“…Para contrarrestar este efecto, se crearon diversos estudios o registros internacionales (Eurofever, Infevers, Blau Registry) con el objetivo de ampliar el conocimiento de la presentación clínica, las complicaciones y el tratamiento, además de agilizar y mejorar el rápido reconocimiento de estas enfermedades en la comunidad médica, y también proveer información a los padres y los pacientes. 57,59 n BIBLIOGRAFÍA…”