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2025-01-01
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CONJOINED TWINS: A WORLDWIDE COLLABORATIVE EPIDEMIOLOGICAL STUDY OF THE INTERNATIONAL CLEARINGHOUSE FOR BIRTH DEFECTS SURVEILLANCE AND RESEARCH
Author
Mutchinick, Osvaldo M.
Luna-Muñoz, Leonora
Amar, Emmanuelle
Bakker, Marian K.
Clementi, Maurizio
Cocchi, Guido
Dutra, Maria da Graça
Feldkamp, Marcia L.
Landau, Danielle
Leoncini, Emanuele
Li, Zhu
Lowry, Brian
Marengo, Lisa K.
Martínez-Frías, María-Luisa
Mastroiacovo, Pierpaolo
Métneki, Julia
Morgan, Margery
Pierini, Anna
Rissman, Anke
Ritvanen, Annukka
Scarano, Gioacchino
Siffel, Csaba
Szabova, Elena
Arteaga-Vázquez, Jazmín
Luna-Muñoz, Leonora
Amar, Emmanuelle
Bakker, Marian K.
Clementi, Maurizio
Cocchi, Guido
Dutra, Maria da Graça
Feldkamp, Marcia L.
Landau, Danielle
Leoncini, Emanuele
Li, Zhu
Lowry, Brian
Marengo, Lisa K.
Martínez-Frías, María-Luisa
Mastroiacovo, Pierpaolo
Métneki, Julia
Morgan, Margery
Pierini, Anna
Rissman, Anke
Ritvanen, Annukka
Scarano, Gioacchino
Siffel, Csaba
Szabova, Elena
Arteaga-Vázquez, Jazmín
Affilliation
Instituto Nacional de Ciencias Médicas y Nutrición “Salvador Zubirán”. Departamento de Genética. RYVEMCE (Registro y Vigilancia Epidemiológica de Malformaciones Congénitas), México City, Mexico.
Instituto Nacional de Ciencias Médicas y Nutrición “Salvador Zubirán”. Departamento de Genética. RYVEMCE (Registro y Vigilancia Epidemiológica de Malformaciones Congénitas), México City, Mexico.
Rhone-Alps Registry of Birth Defects REMERA. Lyon, France.
Eurocat Northern Netherlands. Department of Genetics. University Medical Center Groningen. Groningen, The Netherlands.
University of Padua. Clinical Genetics Unit, Department of Pediatrics. Padua, Italy.
IMER Registry.Department of Pediatrics. Bologna University. Bologna, Italy.
Instituto Nacional de Genética Médica Populacional-INAGEMP. Rio de Janeiro, RJ, Brasil / Fundação Oswaldo Cruz. Instituto Oswaldo Cruz. ECLAMC (Estudio Colaborativo Latino Americano de Malformaciones Congénitas); Rio de Janeiro, RJ, Brasil.
University of Utah Health Sciences Center. Department of Medical Genetics. Salt Lake City, Utah, USA / Utah Birth Defect Network. Utah Department of Health. Salt Lake City, Utah.
Soroka University Medical Center. Department of Neonatology. Beer-Sheba, Israel.
Centre of the International Clearinghouse for Birth Defects Surveillance and Research. Rome, Italy.
Peking University Health Science Center. National Center for Maternal and Infant Health. Beijing, Peoples Republic of China.
Alberta Congenital Anomalies Surveillance System, Alberta Health & Wellness. Calgary, Alberta, Canada. a
Texas Department of State Health Services. Birth Defects Epidemiology and Surveillance Branch. Texas, USA.
ECEMC (Spanish Collaborative Study of Congenital Malformations), Centro de Investigación sobre Anomalías Congénitas (CIAC), Instituto de Salud Carlos III (ISCIII). Madrid, Spain / CIBER de Enfermedades Raras (CIBERER) (Centre for Biomedical Research on Rare Diseases). Madrid, Spain / Universidad Complutense de Madrid. Department of Pharmacology. Faculty of Medicine. Madrid Spain.
Centre of the International Clearinghouse for Birth Defects Surveillance and Research. Rome, Italy.
National Center for Healthcare Audit and Inspection. Department of Hungarian Congenital Abnormality Registry and Surveillance. Budapest, Hungary.
CARIS, the Congenital Anomaly Register for Wales. Singleton Hospital, Swansea, UK / Tuscany Registry of Congenital Defects. Epidemiology Unity Institute of Clinical Fisiology, Pisa, Italy.
Malformation Monitoring Centre Saxony-Anhalt. Germany
The Finnish Register of Congenital Malformations. National Institute for Health and Welfare, THL, Helsinki, Finland.
Birth Defects Campania Registry, Medical Genetics Department, General Hospital “G. Rummo” Benevento, Italy.
Centers for Disease Control and Prevention. National Center on Birth Defects and Developmental Disabilities. Metropolitan Atlanta Congenital Defects Program. Atlanta, Georgia, USA.
Slovak Teratologic Information Centre. Slovak Medical University. Bratislava, Slovak Republic.
Instituto Nacional de Ciencias Médicas y Nutrición “Salvador Zubirán”. Departamento de Genética. RYVEMCE (Registro y Vigilancia Epidemiológica de Malformaciones Congénitas), México City, Mexico.
Instituto Nacional de Ciencias Médicas y Nutrición “Salvador Zubirán”. Departamento de Genética. RYVEMCE (Registro y Vigilancia Epidemiológica de Malformaciones Congénitas), México City, Mexico.
Rhone-Alps Registry of Birth Defects REMERA. Lyon, France.
Eurocat Northern Netherlands. Department of Genetics. University Medical Center Groningen. Groningen, The Netherlands.
University of Padua. Clinical Genetics Unit, Department of Pediatrics. Padua, Italy.
IMER Registry.Department of Pediatrics. Bologna University. Bologna, Italy.
Instituto Nacional de Genética Médica Populacional-INAGEMP. Rio de Janeiro, RJ, Brasil / Fundação Oswaldo Cruz. Instituto Oswaldo Cruz. ECLAMC (Estudio Colaborativo Latino Americano de Malformaciones Congénitas); Rio de Janeiro, RJ, Brasil.
University of Utah Health Sciences Center. Department of Medical Genetics. Salt Lake City, Utah, USA / Utah Birth Defect Network. Utah Department of Health. Salt Lake City, Utah.
Soroka University Medical Center. Department of Neonatology. Beer-Sheba, Israel.
Centre of the International Clearinghouse for Birth Defects Surveillance and Research. Rome, Italy.
Peking University Health Science Center. National Center for Maternal and Infant Health. Beijing, Peoples Republic of China.
Alberta Congenital Anomalies Surveillance System, Alberta Health & Wellness. Calgary, Alberta, Canada. a
Texas Department of State Health Services. Birth Defects Epidemiology and Surveillance Branch. Texas, USA.
ECEMC (Spanish Collaborative Study of Congenital Malformations), Centro de Investigación sobre Anomalías Congénitas (CIAC), Instituto de Salud Carlos III (ISCIII). Madrid, Spain / CIBER de Enfermedades Raras (CIBERER) (Centre for Biomedical Research on Rare Diseases). Madrid, Spain / Universidad Complutense de Madrid. Department of Pharmacology. Faculty of Medicine. Madrid Spain.
Centre of the International Clearinghouse for Birth Defects Surveillance and Research. Rome, Italy.
National Center for Healthcare Audit and Inspection. Department of Hungarian Congenital Abnormality Registry and Surveillance. Budapest, Hungary.
CARIS, the Congenital Anomaly Register for Wales. Singleton Hospital, Swansea, UK / Tuscany Registry of Congenital Defects. Epidemiology Unity Institute of Clinical Fisiology, Pisa, Italy.
Malformation Monitoring Centre Saxony-Anhalt. Germany
The Finnish Register of Congenital Malformations. National Institute for Health and Welfare, THL, Helsinki, Finland.
Birth Defects Campania Registry, Medical Genetics Department, General Hospital “G. Rummo” Benevento, Italy.
Centers for Disease Control and Prevention. National Center on Birth Defects and Developmental Disabilities. Metropolitan Atlanta Congenital Defects Program. Atlanta, Georgia, USA.
Slovak Teratologic Information Centre. Slovak Medical University. Bratislava, Slovak Republic.
Instituto Nacional de Ciencias Médicas y Nutrición “Salvador Zubirán”. Departamento de Genética. RYVEMCE (Registro y Vigilancia Epidemiológica de Malformaciones Congénitas), México City, Mexico.
Abstract
Conjoined twins (CT) are a very rare developmental accident of uncertain etiology. Prevalence has been previously estimated to be 1 in 50,000 to 1 in 100,000 births. The process by which monozygotic twins do not fully separate but form CT is not well understood. The purpose of the present study was to analyze diverse epidemiological aspects of CT, including the different variables listed in the Introduction Section of this issue of the Journal. The study was made possible using the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) structure. This multicenter worldwide research includes the largest sample of CT ever studied. A total of 383 carefully reviewed sets of CT obtained from 26,138,837 births reported by 21 Clearinghouse Surveillance Programs (SP) were included in the analysis. Total prevalence was 1.47 per 100,000 births (95% CI: 1.32-1.62). Salient findings including an evident variation in prevalence among SPs: a marked variation in the type of pregnancy outcome, a similarity in the proportion of CT types among programs: a significant female predominance in CT: particularly of the thoracopagus type and a significant male predominance in parapagus and parasitic types: significant differences in prevalence by ethnicity and an apparent increasing prevalence trend in South American countries. No genetic, environmental or demographic significant associated factors were identified. Further work in epidemiology and molecular research is necessary to understand the etiology and pathogenesis involved in the development of this fascinating phenomenon of nature.
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