title: [Telemedicine in thrombotic microangiopathies: A way forward in rare diseases requiring emergency care].
abstract: Thrombotic microangiopathies (TMA) represent rare diseases requiring a high skill for their management that deserved in France the identification of a dedicated National reference center. TMA are short-term life-threatening diseases; however, with an adapted management, their prognosis can be excellent. It is therefore mandatory to recognize and treat them rapidly according to standard guidelines. Telemedicine is a specialized hub consisting of highly skilled staff trained in a specific domain of medicine. The telemedicine activity of a reference center is an important representative indicator of its expertise and recourse ability. It requires to be accurately evaluated and promoted. In this work, we report the French reference center for TMA telemedicine activity since its setting-up. TMA represent an interesting model of diseases that required a specific organization of telemedicine activity to adapt to clinicians demand, which includes particularly the need to answer resorts in real time 24/7.
authors.affiliation: Service d'hématologie, hôpital Saint-Antoine, AP-HP, 75012 Paris, France; Centre de référence des microangiopathies thrombotiques, hôpital Saint-Antoine, université Pierre-et-Marie-Curie, AP-HP, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France; UPMC Université Paris 06, 75005 Paris, France; Inserm U1170, institut Gustave-Roussy, Villejuif, 94800 France. Electronic address: paul.coppo@aphp.fr.
authors.forename: P
authors.initials: P
authors.lastname: Coppo
authors.affiliation: Service d'hématologie, hôpital Saint-Antoine, AP-HP, 75012 Paris, France; Centre de référence des microangiopathies thrombotiques, hôpital Saint-Antoine, université Pierre-et-Marie-Curie, AP-HP, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France.
authors.forename: E
authors.initials: E
authors.lastname: Corre
authors.affiliation: Centre de référence des microangiopathies thrombotiques, hôpital Saint-Antoine, université Pierre-et-Marie-Curie, AP-HP, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France; UPMC Université Paris 06, 75005 Paris, France; UNTR, hôpital Tenon, AP-HP, 75020 Paris, France.
authors.forename: E
authors.initials: E
authors.lastname: Rondeau
authors.affiliation: Centre de référence des microangiopathies thrombotiques, hôpital Saint-Antoine, université Pierre-et-Marie-Curie, AP-HP, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France; Service de médecine interne, CHU Charles-Nicolle, 76030 Rouen, France; Inserm U1096, 76000 Rouen, France.
authors.forename: Y
authors.initials: Y
authors.lastname: Benhamou
authors.affiliation: Association de patients ADAMTS13, 1, allée des Martinets, 42450 Sury-Le-Comtal, France.
authors.forename: A
authors.initials: A
authors.lastname: Bachet
authors.affiliation: Centre de référence des microangiopathies thrombotiques, hôpital Saint-Antoine, université Pierre-et-Marie-Curie, AP-HP, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France; Service d'hématologie biologique, hôpital Lariboisière, AP-HP, 75010 Paris, France; Université Paris-Diderot, Sorbonne Paris Cité, 75013 Paris, France.
authors.forename: A
authors.initials: A
authors.lastname: Stépanian
authors.affiliation: Centre de référence des microangiopathies thrombotiques, hôpital Saint-Antoine, université Pierre-et-Marie-Curie, AP-HP, 184, rue du Faubourg-Saint-Antoine, 75012 Paris, France; Service d'hématologie biologique, hôpital Lariboisière, AP-HP, 75010 Paris, France; Université Paris-Diderot, Sorbonne Paris Cité, 75013 Paris, France; Université Paris-Diderot, institut universitaire d'hématologie, EA3518, 75010 Paris, France.
authors.forename: A
authors.initials: A
authors.lastname: Veyradier
mesh_terms: D004632:Emergency Medical Services / Q000379:methods*; D005602:France; D006801:Humans; D035583:Rare Diseases / Q000628:therapy; D017216:Telemedicine / Q000379:methods*; D057049:Thrombotic Microangiopathies / Q000628:therapy*
keywords: Centre de référence; Hemolytic and uremic syndrome; Microangiopathie thrombotique; Purpura thrombotique thrombocytopénique; Recours; Recourse; Reference center; Syndrome hémolytique et urémique; Telemedicine; Thrombotic microangiopathies; Thrombotic thrombocytopenic purpura; Télémédecine