Latin American consensus on the supportive management of patients with severe combined immunodeficiency

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dc.contributor.authorBustamante Ogando, Juan Carlos
dc.contributor.authorPartida Gaytán, Armando
dc.contributor.authorAldave Becerra, Juan Carlos
dc.contributor.authorÁlvarez Cardona, Aristóteles
dc.contributor.authorBezrodnik, Liliana
dc.contributor.authorBorzutzky, Arturo
dc.contributor.authorBlancas Galicia, Lizbeth
dc.contributor.authorCabanillas, Diana
dc.contributor.authorCondino-Neto, Antonio
dc.contributor.authorColsa Ranero, Agustín De
dc.contributor.authorEspinosa Padilla, Sara
dc.contributor.authorFolloni Fernandes, Juliana
dc.contributor.authorGarcía Campos, Jorge Alberto
dc.contributor.authorGómez Tello, Héctor
dc.contributor.authorGonzález Serrano, María Edith
dc.contributor.authorGutiérrez Hernández, Alonso
dc.contributor.authorHernández Bautista, Víctor Manuel
dc.contributor.authorIvankovich Escoto, Gabriele
dc.contributor.authorKing, Alejandra
dc.contributor.authorLessa Mazzucchelli, Juliana
dc.contributor.authorLlamas Guillén, Beatriz Adriana
dc.contributor.authorLugo Reyes, Saul Oswaldo
dc.contributor.authorMoreno Espinosa, Sarbelio
dc.contributor.authorOleastro, Matías
dc.contributor.authorOtero Mendoza, Francisco
dc.contributor.authorPoli, Cecilia
dc.contributor.authorPorras, Oscar
dc.contributor.authorRamirez Uribe, Nideshda
dc.contributor.authorRegairaz, Lorean
dc.contributor.authorRivas Larrauri, Francisco
dc.contributor.authorSaracho Weber, Federico José
dc.contributor.authorGrumach, Anete S.
dc.contributor.authorStaines Boone, Tamara
dc.contributor.authorTavares Costa-Carvalho, Beatriz
dc.contributor.authorYamazaki Nakashimada, Marco Antonio
dc.contributor.authorEspinosa Rosales, Francisco Javier
dc.date.accessioned2022-07-13T21:13:47Z
dc.date.available2022-07-13T21:13:47Z
dc.date.issued2019
dc.description.abstractSevere combined immunodeficiency (SCID) represents the most lethal form of primary immunodeficiency, with mortality rates of greater than 90% within the first year of life without treatment. Hematopoietic stem cell transplantation and gene therapy are the only curative treatments available, and the best-known prognostic factors for success are age at diagnosis, age at hematopoietic stem cell transplantation, and the comorbidities that develop in between. There are no evidence-based guidelines for standardized clinical care for patients with SCID during the time between diagnosis and definitive treatment, and we aim to generate a consensus management strategy on the supportive care of patients with SCID. First, we gathered available information about SCID diagnostic and therapeutic guidelines, then we developed a document including diagnostic and therapeutic interventions, and finally we submitted the interventions for expert consensus through a modified Delphi technique. Interventions are grouped in 10 topic domains, including 123 “agreed” and 38 “nonagreed” statements. This document intends to standardize supportive clinical care of patients with SCID from diagnosis to definitive treatment, reduce disease burden, and ultimately improve prognosis, particularly in countries where newborn screening for SCID is not universally available and delayed diagnosis is the rule. Our work intends to provide a tool not only for immunologists but also for primary care physicians and other specialists involved in the care of patients with SCID.es
dc.description.versionVersión Publicadaes
dc.identifier.citationJuan Carlos Bustamante Ogando, Armando Partida Gaytán, Juan Carlos Aldave Becerra, Aristóteles Álvarez Cardona, Liliana Bezrodnik, Arturo Borzutzky, Lizbeth Blancas Galicia, Diana Cabanillas, Antonio Condino-Neto, Agustín De Colsa Ranero, Sara Espinosa Padilla, Juliana Folloni Fernandes, Jorge Alberto García Campos, Héctor Gómez Tello, María Edith González Serrano, Alonso Gutiérrez Hernández, Víctor Manuel Hernández Bautista, Gabriele Ivankovich Escoto, Alejandra King, Juliana Lessa Mazzucchelli, Beatriz Adriana Llamas Guillén, Saul Oswaldo Lugo Reyes, Sarbelio Moreno Espinosa, Matías Oleastro, Francisco Otero Mendoza, María Cecilia Poli Harlowe, Oscar Porras, Nideshda Ramirez Uribe, Lorean Regairaz, Francisco Rivas Larrauri, Federico José Saracho Weber, Anete S. Grumach, Tamara Staines Boone, Beatriz Tavares Costa-Carvalho, Marco Antonio Yamazaki Nakashimada, Francisco Javier Espinosa Rosales, Latin American consensus on the supportive management of patients with severe combined immunodeficiency, Journal of Allergy and Clinical Immunology, Volume 144, Issue 4, 2019, Pages 897-905, ISSN 0091-6749, https://doi.org/10.1016/j.jaci.2019.08.002.es
dc.identifier.urihttps://doi.org/10.1016/j.jaci.2019.08.002es
dc.identifier.urihttp://hdl.handle.net/11447/6368
dc.language.isoenes
dc.subjectSevere combined immunodeficiencyes
dc.subjectConsensuses
dc.subjectTrans- plantationes
dc.subjectSupportive measureses
dc.subjectTreatmentes
dc.subjectImmunodeficiencyes
dc.subjectTransplantationes
dc.subjectprimary immunodeficiencyes
dc.titleLatin American consensus on the supportive management of patients with severe combined immunodeficiencyes
dc.typeArticlees
dcterms.sourceJournal of Allergy and Clinical Immunologyes

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