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Allogeneic Hematopoietic Stem Cell Transplantation in Immunodeficiency-Centromeric Instability-Facial Dysmorphism (ICF) Syndrome: an EBMT/ESID Inborn Errors Working Party Study.
Berghuis, Dagmar; Mehyar, Lubna S; Abu-Arja, Rolla; Albert, Michael H; Barnum, Jessie L; von Bernuth, Horst; Elfeky, Reem; Lewalle, Philippe; Laberko, Alexandra; Ghosh, Sujal; Slatter, Mary A; Weemaes, Corry M R; Yesilipek, Akif; Sirait, Tiarlan; Neven, Bénédicte; Gennery, Andrew R; Lankester, Arjan C.
Afiliación
  • Berghuis D; Willem-Alexander Children's Hospital, Department of Pediatrics, Division of Pediatric Immunology, Hematology and Stem Cell Transplantation, Leiden University Medical Center, Leiden, The Netherlands. d.berghuis@lumc.nl.
  • Mehyar LS; Division of Pediatric Hematology, Oncology, Blood and Marrow Transplant, Dayton Children's Hospital/Department of Pediatrics, Boonshoft School of Medicine, Wright State University, Dayton, OH, USA.
  • Abu-Arja R; The Blood and Marrow Transplant Program, Nationwide Children's Hospital, Colombia, OH, USA.
  • Albert MH; Department of Pediatrics, Dr. Von Hauner Children's Hospital, University Hospital, LMU, Munich, Germany.
  • Barnum JL; Division of Blood and Marrow Transplantation and Cellular Therapies, University of Pittsburgh Medical Center (UPMC) and Children's Hospital of Pittsburgh, Pittsburgh, PA, USA.
  • von Bernuth H; Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Department of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine, University Hospital Center, Berlin, Germany.
  • Elfeky R; Department of Immunology, Labor Berlin GmbH, Berlin, Germany.
  • Lewalle P; Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health (BIH), Berlin-Brandenburg Center for Regenerative Therapies (BCRT), Berlin, Germany.
  • Laberko A; Great Ormond Street (GOS) Hospital for Children National Health Service (NHS) Foundation Trust, University College London Great Ormond Street (GOS) Institute of Child Health, and National Institute for Health and Care Research (NIHR), Great Ormond Street Hospital (GOSH), Biomedical Research Centre (
  • Ghosh S; Hematology Department, Hopital Universitaire de Bruxelles (HUB)-Institut Jules Bordet, Brussels, Belgium.
  • Slatter MA; Department of Hematopoietic Stem Cell Transplantation, Oncology and Immunology, Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Moscow, Russia.
  • Weemaes CMR; Department of Pediatric Oncology, Hematology and Clinical Immunology, Medical Faculty, Center of Child and Adolescent Health, Heinrich-Heine-University, Duesseldorf, Germany.
  • Yesilipek A; Children's Haemopoietic Stem Cell Transplant Unit, Great North Children's Hospital, Newcastle-upon-Tyne Hospital NHS Foundation Trust, Newcastle Upon Tyne, UK.
  • Sirait T; Department of Pediatrics, Radboud University Medical Centre Nijmegen, Nijmegen, the Netherlands.
  • Neven B; Department of Pediatric Hematology and Pediatric Stem Cell Transplantation Unit, Medicalpark Antalya Hospital, Antalya, Turkey.
  • Gennery AR; EBMT Leiden Study Unit, Leiden, The Netherlands.
  • Lankester AC; Immuno-hematology and rheumatology Unit, Necker Children Hospital, Imagine Institute, UMR 1163, University of Paris Cite, Paris, France.
J Clin Immunol ; 44(8): 182, 2024 Aug 21.
Article en En | MEDLINE | ID: mdl-39167297
ABSTRACT
Immunodeficiency-Centromeric instability-Facial dysmorphism (ICF) syndrome is an inborn error of immunity characterized by progressive immune dysfunction and multi-organ disease usually treated with antimicrobial prophylaxis and immunoglobulin substitution. Allogeneic hematopoietic stem cell transplantation (HSCT) is the only curative treatment, but data on outcome are scarce. We provide a detailed description of disease characteristics and HSCT outcome in an international cohort of ICF syndrome patients. Eighteen patients (including all four genotypes) were enrolled. Main HSCT indications were infections (83%), enteropathy/failure to thrive (56%), immune dysregulation (22%) and myelodysplasia/haematological malignancy (17%). Two patients underwent pre-emptive HSCT after early diagnosis. Patients were transplanted between 2003-2021, at median age 4.3 years (range 0.5-19), after myeloablative or reduced-intensity conditioning, from matched sibling or matched family donors, matched unrelated or mismatched donors in 39%, 50% and 12% of cases respectively. Overall survival was 83% (all deaths occurred within the first 5 months post-HSCT; mean follow-up 54 months (range 1-185)). Acute GvHD occurred in 35% of patients, severe (grade III) in two (12%), while none developed chronic GvHD. At latest follow-up (median 2.2 years (range 0.1-14)), complete donor chimerism was achieved in 15/17 surviving patients. All survivors demonstrated normalized T and B cell numbers. Immunoglobulin substitution independence was achieved in all but two patients. All survivors recovered from pre-transplant infections, enteropathy/failure to thrive and immune dysregulation. All three patients transplanted at young age (≤ 3 years), after early diagnosis, survived. The favourable clinical and immunological HSCT outcome in this cohort of patients supports the timely use of this curative treatment in ICF syndrome.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trasplante Homólogo / Trasplante de Células Madre Hematopoyéticas / Enfermedad Injerto contra Huésped Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male Idioma: En Revista: J Clin Immunol Año: 2024 Tipo del documento: Article País de afiliación: Países Bajos Pais de publicación: Países Bajos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trasplante Homólogo / Trasplante de Células Madre Hematopoyéticas / Enfermedad Injerto contra Huésped Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male Idioma: En Revista: J Clin Immunol Año: 2024 Tipo del documento: Article País de afiliación: Países Bajos Pais de publicación: Países Bajos