The role of registries in hematological disorders

Helen Baldomero¹, Daniel Neumann², Nada Hamad³, Yoshiko Atsuta⁴, Anna Sureda⁵, Minako Iida⁶, Amado Karduss⁷, Alaa M Elhaddad⁸, Nosa G Bazuaye⁹, Carmem Bonfim¹⁰, Rafael de la Camara¹¹, Naeem A Chaudhri¹², Fabio Ciceri¹³, Cinthya Correa¹⁴, Cristobal Frutos¹⁵, Sebastian Galeano¹⁶, Laurent Garderet¹⁷, Raffaella Greco¹⁸, Gregorio Jaimovich¹⁹, Yoshihisa Kodera⁶, Mickey Bc Koh²⁰, Kaiyan Liu²¹, Per Ljungman²², Donal P McLornan²³, Gayathri Nair²⁴, Shinichiro Okamoto²⁵, Marcelo C Pasquini²⁶, Jacob Passweg²⁷, Kristjan Paulson²⁸, Annalisa Ruggeri¹⁸, Adriana Seber²⁹, John A Snowden³⁰, Alok Srivastava³¹, Nina Worel³², Wael Saber²², Damiano Rondelli³³, Mahmoud Aljurf¹², Dietger Niederwieser³⁴; Worldwide Network of Blood and Marrow Transplantation

Affiliations

¹ Worldwide Network of Blood and Marrow Transplantation (WBMT) Transplant Activity Survey Office, University Hospital, Basel, CH, UK.
² Institute of Medical Informatics, Statistics and Epidemiology, University of Leipzig, Leipzig, Germany.
³ Haematology Clinical Research Unit, St. Vincent's Health Network, Kinghorn Cancer Centre, Sydney, Australia; Department of Haematology, St Vincent's Hospital Sydney, Australia; School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Australia; School of Medicine, Sydney, Australia; University of Notre Dame Australia, Australia.
⁴ Japanese Data Center for Hematopoietic Cell Transplantation, Nagakute, Japan; Department of Registry Science for Transplant and Cellular Therapy, Aichi Medical University School of Medicine, Nagakute, Japan.
⁵ Clinical Hematology Department, Institut Català d'Oncologia - L'Hospitalet, IDIBELL, Universitat de Barcelona, Barcelona, Spain.
⁶ Department of Promotion for Blood and Marrow Transplantation, Aichi Medical University School of Medicine, Nagakute, Japan.
⁷ Instituto de Cancerología-Clínica Las Américas, Medellín, Colombia.
⁸ Department of Pediatric Oncology and Stem Cell Transplantation Unit, Cairo University Cairo, Egypt.
⁹ Department of Hematology and Blood Transfusion, University of Benin Teaching Hospital, Edo State, Nigeria.
¹⁰ Pele Pequeno Principe Research Institute/ Pediatric Blood and Marrow Transplantation Program Hospital Pequeno Principe, Curitiba, Brazil.
¹¹ Hematology Department, Hospital de la Princesa, Madrid, Spain.
¹² Oncology Center, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
¹³ Ospedale San Raffaele s.r.l., Haematology and BMT, Milano, Italy.
¹⁴ Hospital Israelita Albert Einstein, Sao Paula Brazil.
¹⁵ Instituto de Previsión Social, Asunción, Paraguay.
¹⁶ Hospital Británico, Montevideo, Uruguay.
¹⁷ Sorbonne Université, Service d'Hématologie et Thérapie Cellulaire, HôpitalPitié Salpêtrière, AP-HP, Paris, France.
¹⁸ Unit of Hematology and Bone Marrow Transplantation, IRCCS San Raffaele Hospital, Vita-Salute San Raffaele University, Milan, Italy.
¹⁹ Hospital Universitario Fundacion Favaloro, Buenos Aires, Argentina.
²⁰ Institute for Infection and Immunity St. George's Hospital and Medical School, University of London, London, UK.
²¹ Department of Hematology, Peking University Institute of Hematology, Beijing, China.
²² Department of Cellular Therapy and Allogeneic Stem Cell Transplantation, Karolinska Comprehensive Cancer Center, Karolinska University Hospital Huddinge, Stockholm, Sweden.
²³ Department of Haematology, University College Hospital, London, UK.
²⁴ Blutspende SRK Schweiz AG, UK.
²⁵ Division of Hematology, Department of Medicine, Keio University School of Medicine, Tokyo, Japan.
²⁶ Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin, Milwaukee, WI, USA.
²⁷ The Worldwide Network of Blood and Marrow Transplantation (WBMT) Transplant Activity Survey Office, University Hospital, Basel, Switzerland.
²⁸ Section of Haematology/Oncology, Department of Internal Medicine, Max Rady College of Medicine, The University of Manitoba, Winnipeg, Manitoba, Canada.
²⁹ Hospital Samaritano Higienópolis & Graacc-- Universidade Federal de Sao Paulo, Sao Paulo, Brazil.
³⁰ Department of Haematology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
³¹ Department of Hematology, Christian Medical College Hospital, Vellore, India.
³² Department of Transfusion Medicine and Cell Therapy, Medical University of Vienna, Vienna, Austria.
³³ Division of Hematology/Oncology, University of Illinois at Chicago, Chicago, IL, USA.
³⁴ University of Leipzig, Leipzig, Germany; Aichi Medical University School of Medicine, Nagakute, Japan; Lithuanian University of Health Sciences, Kaunas, Lithuania. Electronic address: dietger@medizin.uni-leipzig.de.

PMID: 39098798
DOI: 10.1016/j.beha.2024.101556

Free article

Review

The role of registries in hematological disorders

Helen Baldomero et al. Best Pract Res Clin Haematol. 2024 Jun.

Free article

. 2024 Jun;37(2):101556.

doi: 10.1016/j.beha.2024.101556. Epub 2024 Jul 5.

Authors

Affiliations

¹ Worldwide Network of Blood and Marrow Transplantation (WBMT) Transplant Activity Survey Office, University Hospital, Basel, CH, UK.
² Institute of Medical Informatics, Statistics and Epidemiology, University of Leipzig, Leipzig, Germany.
³ Haematology Clinical Research Unit, St. Vincent's Health Network, Kinghorn Cancer Centre, Sydney, Australia; Department of Haematology, St Vincent's Hospital Sydney, Australia; School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Australia; School of Medicine, Sydney, Australia; University of Notre Dame Australia, Australia.
⁴ Japanese Data Center for Hematopoietic Cell Transplantation, Nagakute, Japan; Department of Registry Science for Transplant and Cellular Therapy, Aichi Medical University School of Medicine, Nagakute, Japan.
⁵ Clinical Hematology Department, Institut Català d'Oncologia - L'Hospitalet, IDIBELL, Universitat de Barcelona, Barcelona, Spain.
⁶ Department of Promotion for Blood and Marrow Transplantation, Aichi Medical University School of Medicine, Nagakute, Japan.
⁷ Instituto de Cancerología-Clínica Las Américas, Medellín, Colombia.
⁸ Department of Pediatric Oncology and Stem Cell Transplantation Unit, Cairo University Cairo, Egypt.
⁹ Department of Hematology and Blood Transfusion, University of Benin Teaching Hospital, Edo State, Nigeria.
¹⁰ Pele Pequeno Principe Research Institute/ Pediatric Blood and Marrow Transplantation Program Hospital Pequeno Principe, Curitiba, Brazil.
¹¹ Hematology Department, Hospital de la Princesa, Madrid, Spain.
¹² Oncology Center, King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia.
¹³ Ospedale San Raffaele s.r.l., Haematology and BMT, Milano, Italy.
¹⁴ Hospital Israelita Albert Einstein, Sao Paula Brazil.
¹⁵ Instituto de Previsión Social, Asunción, Paraguay.
¹⁶ Hospital Británico, Montevideo, Uruguay.
¹⁷ Sorbonne Université, Service d'Hématologie et Thérapie Cellulaire, HôpitalPitié Salpêtrière, AP-HP, Paris, France.
¹⁸ Unit of Hematology and Bone Marrow Transplantation, IRCCS San Raffaele Hospital, Vita-Salute San Raffaele University, Milan, Italy.
¹⁹ Hospital Universitario Fundacion Favaloro, Buenos Aires, Argentina.
²⁰ Institute for Infection and Immunity St. George's Hospital and Medical School, University of London, London, UK.
²¹ Department of Hematology, Peking University Institute of Hematology, Beijing, China.
²² Department of Cellular Therapy and Allogeneic Stem Cell Transplantation, Karolinska Comprehensive Cancer Center, Karolinska University Hospital Huddinge, Stockholm, Sweden.
²³ Department of Haematology, University College Hospital, London, UK.
²⁴ Blutspende SRK Schweiz AG, UK.
²⁵ Division of Hematology, Department of Medicine, Keio University School of Medicine, Tokyo, Japan.
²⁶ Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin, Milwaukee, WI, USA.
²⁷ The Worldwide Network of Blood and Marrow Transplantation (WBMT) Transplant Activity Survey Office, University Hospital, Basel, Switzerland.
²⁸ Section of Haematology/Oncology, Department of Internal Medicine, Max Rady College of Medicine, The University of Manitoba, Winnipeg, Manitoba, Canada.
²⁹ Hospital Samaritano Higienópolis & Graacc-- Universidade Federal de Sao Paulo, Sao Paulo, Brazil.
³⁰ Department of Haematology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
³¹ Department of Hematology, Christian Medical College Hospital, Vellore, India.
³² Department of Transfusion Medicine and Cell Therapy, Medical University of Vienna, Vienna, Austria.
³³ Division of Hematology/Oncology, University of Illinois at Chicago, Chicago, IL, USA.
³⁴ University of Leipzig, Leipzig, Germany; Aichi Medical University School of Medicine, Nagakute, Japan; Lithuanian University of Health Sciences, Kaunas, Lithuania. Electronic address: dietger@medizin.uni-leipzig.de.

PMID: 39098798
DOI: 10.1016/j.beha.2024.101556

Abstract

Hematopoietic cell transplantation (HCT) was developed more than 65 years ago to treat malignant blood disorders and irreversible bone marrow failures, with the aim of replacing a diseased hematopoietic system with a healthy one (allogeneic HCT). Decades later, the procedure was adapted to apply maximal chemotherapy or radiotherapy, which would result in bone marrow failure, but could be remedied by an infusion of a patient's own cryopreserved bone marrow (autologous HCT). Both treatments are high-risk and complex, especially during the initial phases. However, concerted efforts, vision, and collaboration between physicians and centers worldwide have resulted in HCT becoming a standard of care for many hematological disorders with progressive improvements in outcomes. Registries and the collaboration of societies worldwide have enabled the delivery of this curative therapy to many patients with fatal hematological diseases. More than 1.5 million HCT were performed between 1957 and 2019, and activity is continuously increasing worldwide.

Keywords: Allogeneic HCT; Autologous HCT; Hematopoietic cell transplantation (HCT); Leukemia; Outcome registry; Registries; Survey.

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Conflict of interest statement

Declaration of competing interest: NH reports advisory board honoraria from Janssen, Novartis, Takeda, Abbvie, Roche, Astellas and Bigene. YA reports consulting fees from JCR Pharmaceuticals Co., Ltd. and Kyowa Kirin Co., Ltd., lecture fees from Otsuka Pharmaceutical Co., Ltd, Chugai Pharmaceutical Co., Ltd., Novartis Pharma KK, AbbVie GK, and honorarium from Meiji Seika Pharma Co., Ltd. MI is affiliated with the Department of Promotion for Blood and Marrow Transplantation at the Aichi Medical University School of Medicine, and the department is endowed by AIR WATER INC., Clinigen K.K., and JCR Pharmaceuticals Co., Ltd. CF reports support for attending meetings from Casa Bollar and support for attending meetings and travel from Diaz Gill Lab and Prosalud. LG reports consulting fees from Sanofi, Janssen Pharmaceutical, Bristol Myers Squibb, and GlaxoSmithKline Pharmaceuticals and support for attending meetings and travel from Pfizer and Sanofi. KK reports honoraria from Pierre Fabre, Medac, and Novartis. J Snowden reports consulting fees from Jazz Pharmaceuticals, Medac Pharma, Vertex Pharmaceuticals, and participation in a Data Safety Monitoring Board in Kiadis Pharma. NW reports consulting and speakers fees from BMS Celgene, Kite Gilead, Miltenyi BioTec, Novartis, Piere Fabre and Therakos Mallinckrodt. The other authors report no conflicts of interest to disclose.

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The role of registries in hematological disorders

Affiliations

The role of registries in hematological disorders

Authors

Affiliations

Abstract

Conflict of interest statement

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