Long-term outcomes of patients with refractory cytopenia of childhood under observation only

Abstract: Refractory cytopenia of childhood (RCC) describes an entity of well-recognized bone marrow failure defined by persistent cytopenia, dysplastic changes, and a unique histopathological pattern in the bone marrow. Although hematopoietic stem cell transplantation (HSCT) is generally indicated...

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Main Authors: Beatrice Drexler, Stephan Schwarz-Furlan, Irith Baumann, Martina Rudelius, Peter Nöllke, Dirk Lebrecht, Senthilkumar Ramamoorthy, Natalia Rotari, Axel Karow, Shinsuke Hirabayashi, Fabian Beier, Yvonne Lisa Behrens, Gudrun Göhring, Reinhard Kalb, Marcin W. Wlodarski, Brigitte Strahm, Miriam Erlacher, Charlotte M. Niemeyer, Ayami Yoshimi
Format: Article
Language:English
Published: Elsevier 2025-08-01
Series:Blood Advances
Online Access:http://www.sciencedirect.com/science/article/pii/S2473952925003490
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author Beatrice Drexler
Stephan Schwarz-Furlan
Irith Baumann
Martina Rudelius
Peter Nöllke
Dirk Lebrecht
Senthilkumar Ramamoorthy
Natalia Rotari
Axel Karow
Shinsuke Hirabayashi
Fabian Beier
Yvonne Lisa Behrens
Gudrun Göhring
Reinhard Kalb
Marcin W. Wlodarski
Brigitte Strahm
Miriam Erlacher
Charlotte M. Niemeyer
Ayami Yoshimi
author_facet Beatrice Drexler
Stephan Schwarz-Furlan
Irith Baumann
Martina Rudelius
Peter Nöllke
Dirk Lebrecht
Senthilkumar Ramamoorthy
Natalia Rotari
Axel Karow
Shinsuke Hirabayashi
Fabian Beier
Yvonne Lisa Behrens
Gudrun Göhring
Reinhard Kalb
Marcin W. Wlodarski
Brigitte Strahm
Miriam Erlacher
Charlotte M. Niemeyer
Ayami Yoshimi
author_sort Beatrice Drexler
collection DOAJ
description Abstract: Refractory cytopenia of childhood (RCC) describes an entity of well-recognized bone marrow failure defined by persistent cytopenia, dysplastic changes, and a unique histopathological pattern in the bone marrow. Although hematopoietic stem cell transplantation (HSCT) is generally indicated for patients with severe cytopenia or abnormal karyotype, a subset of patients with RCC may be candidates for an observational approach. We evaluated the long-term outcome of patients with RCC without evidence of a genetic predisposition who had a normal karyotype and had not received HSCT or immunosuppressive therapy within 2 years from diagnosis. The median age at diagnosis of the 100 patients analyzed was 10.9 years (range 1.4-17.3); 84% presented with a hypocellular bone marrow. Clonal evolution with abnormal karyotype occurred in 3 patients (3%), and 1 case progressed to myelodysplastic syndrome with excess blasts. Three patients (3%) developed paroxysmal nocturnal hematuria. Overall, 9 patients (9%) received HSCT, and the 5- and 10-year HSCT-free survival was 94% and 88%, respectively. At last follow-up, all patients were alive with a median follow-up time of 7.2 years. These results indicate that an observational approach is safe for selected patients with RCC with a normal karyotype after an exclusion of a germ line predisposition syndrome. However, persistence of cytopenia in most of these patients underscores the importance of long-term surveillance and transition to adult hematology care. This trial was registered at www.clinicaltrials.gov as #NCT00047268 and #NCT00662090.
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spelling doaj-art-ab417daf5a104a1e82756944906e27d22025-08-20T05:07:22ZengElsevierBlood Advances2473-95292025-08-019164279428510.1182/bloodadvances.2025016136Long-term outcomes of patients with refractory cytopenia of childhood under observation onlyBeatrice Drexler0Stephan Schwarz-Furlan1Irith Baumann2Martina Rudelius3Peter Nöllke4Dirk Lebrecht5Senthilkumar Ramamoorthy6Natalia Rotari7Axel Karow8Shinsuke Hirabayashi9Fabian Beier10Yvonne Lisa Behrens11Gudrun Göhring12Reinhard Kalb13Marcin W. Wlodarski14Brigitte Strahm15Miriam Erlacher16Charlotte M. Niemeyer17Ayami Yoshimi18Department of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany; Division of Hematology, University Hospital Basel, Basel, SwitzerlandInstitute of Pathology, Klinikum Kaufbeuren-Ravensburg, Kaufbeuren, GermanyInstitute of Pathology, Klinikum Kaufbeuren-Ravensburg, Kaufbeuren, GermanyInstitute of Pathology, Ludwig-Maximilians-Universität of Munich, Munich, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany; Faculty of Medicine, Institute of Medical Bioinformatics and Systems Medicine, University Medical Center Freiburg, Freiburg, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, GermanyDepartment of Pediatrics and Adolescent Medicine, Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Germany; Comprehensive Cancer Center Erlangen-EMN, Erlangen, GermanyDepartment of Pediatrics, University of Hokkaido, Sapporo, JapanDepartment of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Medical Faculty, Rheinisch-Westfälische Technische Hochschule Aachen University, Aachen, GermanyDepartment of Human Genetics, Hannover Medical School, Hannover, GermanyDepartment of Human Genetics, Hannover Medical School, Hannover, GermanyDepartment of Human Genetics, University of Würzburg Biocenter, Würzburg, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany; Department of Hematology, St. Jude Children's Research Hospital, Memphis, TNDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany; Department of Pediatrics and Adolescent Medicine, University Medical Center Ulm, Ulm, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany; German Cancer Consortium, Partner Site Freiburg, a partnership between Deutsche Krebsforschungszentrum and University Medical Center Freiburg, Freiburg, GermanyDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany; Correspondence: Ayami Yoshimi, Department of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children’s Hospital, Medical Center–University of Freiburg, Faculty of Medicine, University of Freiburg, Breisacherstrasse 62, 79106 Freiburg, Germany;Abstract: Refractory cytopenia of childhood (RCC) describes an entity of well-recognized bone marrow failure defined by persistent cytopenia, dysplastic changes, and a unique histopathological pattern in the bone marrow. Although hematopoietic stem cell transplantation (HSCT) is generally indicated for patients with severe cytopenia or abnormal karyotype, a subset of patients with RCC may be candidates for an observational approach. We evaluated the long-term outcome of patients with RCC without evidence of a genetic predisposition who had a normal karyotype and had not received HSCT or immunosuppressive therapy within 2 years from diagnosis. The median age at diagnosis of the 100 patients analyzed was 10.9 years (range 1.4-17.3); 84% presented with a hypocellular bone marrow. Clonal evolution with abnormal karyotype occurred in 3 patients (3%), and 1 case progressed to myelodysplastic syndrome with excess blasts. Three patients (3%) developed paroxysmal nocturnal hematuria. Overall, 9 patients (9%) received HSCT, and the 5- and 10-year HSCT-free survival was 94% and 88%, respectively. At last follow-up, all patients were alive with a median follow-up time of 7.2 years. These results indicate that an observational approach is safe for selected patients with RCC with a normal karyotype after an exclusion of a germ line predisposition syndrome. However, persistence of cytopenia in most of these patients underscores the importance of long-term surveillance and transition to adult hematology care. This trial was registered at www.clinicaltrials.gov as #NCT00047268 and #NCT00662090.http://www.sciencedirect.com/science/article/pii/S2473952925003490
spellingShingle Beatrice Drexler
Stephan Schwarz-Furlan
Irith Baumann
Martina Rudelius
Peter Nöllke
Dirk Lebrecht
Senthilkumar Ramamoorthy
Natalia Rotari
Axel Karow
Shinsuke Hirabayashi
Fabian Beier
Yvonne Lisa Behrens
Gudrun Göhring
Reinhard Kalb
Marcin W. Wlodarski
Brigitte Strahm
Miriam Erlacher
Charlotte M. Niemeyer
Ayami Yoshimi
Long-term outcomes of patients with refractory cytopenia of childhood under observation only
Blood Advances
title Long-term outcomes of patients with refractory cytopenia of childhood under observation only
title_full Long-term outcomes of patients with refractory cytopenia of childhood under observation only
title_fullStr Long-term outcomes of patients with refractory cytopenia of childhood under observation only
title_full_unstemmed Long-term outcomes of patients with refractory cytopenia of childhood under observation only
title_short Long-term outcomes of patients with refractory cytopenia of childhood under observation only
title_sort long term outcomes of patients with refractory cytopenia of childhood under observation only
url http://www.sciencedirect.com/science/article/pii/S2473952925003490
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