Iris A L M van Rooij1, Loes F M van der Zanden1, Ernie M H F Bongers2, Kirsten Y Renkema3, Charlotte H W Wijers1, Michelle Thonissen4, Elisabeth M J Dokter1,5, Carlo L M Marcelis2, Ivo de Blaauw6,7, Marc H W A Wijnen6, Peter M Hoogerbrugge8, Jos P M Bokkerink8, Michiel F Schreuder8, Linda Koster-Kamphuis8, Elisabeth A M Cornelissen8, Livia Kapusta8, Arno F J van Heijst8, Kian D Liem8, Robert P E de Gier9, Anne Marie Kuijpers-Jagtman4, Ronald J C Admiraal10, Stefaan J Bergé11, Jan Jaap van der Biezen5, An Verdonck12, Vincent Vander Poorten13, Greet Hens13, Jasmien Roosenboom14, Marc R Lilien15, Tom P de Jong16,17, Paul Broens18, Rene Wijnen7, Alice Brooks19, Barbara Franke2,20, Han G Brunner2, Carine E L Carels4,12, Nine V A M Knoers3, Wout F J Feitz9, Nel Roeleveld1,8. 1. Department for Health Evidence, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands. 2. Department of Human Genetics, Radboud university medical center, Nijmegen, The Netherlands. 3. Department of Genetics, University Medical Center Utrecht, The Netherlands. 4. Department of Orthodontics and Craniofacial Biology, Radboud university medical center, Nijmegen, The Netherlands. 5. Department of Plastic Surgery and Hand Surgery, Medical Centre Leeuwarden, Leeuwarden, the Netherlands. 6. Department of Surgery, Pediatric Surgery, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands. 7. Department of Pediatric Surgery, Erasmus Medical Center, Rotterdam, The Netherlands. 8. Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands. 9. Department of Urology, Pediatric Urology, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands. 10. Department of Otorhinolaryngology, Radboud university medical center, Nijmegen, The Netherlands. 11. Department of Oral and Maxillofacial surgery, Radboud university medical center, Nijmegen, The Netherlands. 12. Department of Oral Health Sciences-Orthodontics and Leuven Cleft Lip and Palate Team, KU Leuven, University Hospitals KU Leuven, Belgium. 13. Department of Otorhinolaryngology, Head and Neck Surgery and Leuven Cleft Lip and Palate Team, University Hospitals KU Leuven, Belgium. 14. Department of Neurosciences, Experimental Otorhinolaryngology, KU Leuven, Belgium. 15. Department of Pediatric Nephrology, Wilhelmina Children's Hospital, University Medical Center Utrecht, The Netherlands. 16. Department of Pediatric Urology, Wilhelmina Children's Hospital, University Medical Center Utrecht, The Netherland. 17. Department of Pediatric Urology, Emma Children's Hospital, Academic Medical Center Amsterdam, The Netherlands. 18. Department of Surgery, Division of Pediatric Surgery, University Medical Center Groningen, Groningen, The Netherlands. 19. Department of Clinical Genetics, Erasmus Medical Centre, Rotterdam, The Netherlands. 20. Department of Psychiatry, Radboud university medical center, Nijmegen, The Netherlands.
Abstract
BACKGROUND: Research regarding the etiology of birth defects and childhood cancer is essential to develop preventive measures, but often requires large study populations. Therefore, we established the AGORA data- and biobank in the Netherlands. In this study, we describe its rationale, design, and ongoing data collection. METHODS: Children diagnosed with and/or treated for a structural birth defect or childhood cancer and their parents are invited to participate in the AGORA data- and biobank. Controls are recruited through random sampling from municipal registries. The parents receive questionnaires about demographics, family and pregnancy history, health status, prescribed medication, lifestyle, and occupational exposures before and during the index pregnancy. In addition, blood or saliva is collected from children and parents, while medical records are reviewed for diagnostic information. RESULTS: So far, we have collected data from over 6,860 families (3,747 birth defects, 905 childhood cancers, and 2,208 controls). The types of birth defects vary widely and comprise malformations of the digestive, respiratory, and urogenital tracts as well as facial, cardiovascular, kidney, skeletal, and central nervous system anomalies. The most frequently occurring childhood cancer types are acute lymphatic leukemia, Hodgkin and non-Hodgkin lymphoma, Wilms' tumor, and brain and spinal cord tumors. Our genetic and/or epidemiologic studies have been focused on hypospadias, anorectal malformations, congenital anomalies of the kidney and urinary tract (CAKUT), and orofacial clefts. CONCLUSION: The large AGORA data- and biobank offers great opportunities for investigating genetic and nongenetic risk factors for disorders in children and is open to collaborative initiatives. Birth Defects Research (Part A) 106:675-684, 2016.
BACKGROUND: Research regarding the etiology of birth defects and childhood cancer is essential to develop preventive measures, but often requires large study populations. Therefore, we established the AGORA data- and biobank in the Netherlands. In this study, we describe its rationale, design, and ongoing data collection. METHODS:Children diagnosed with and/or treated for a structural birth defect or childhood cancer and their parents are invited to participate in the AGORA data- and biobank. Controls are recruited through random sampling from municipal registries. The parents receive questionnaires about demographics, family and pregnancy history, health status, prescribed medication, lifestyle, and occupational exposures before and during the index pregnancy. In addition, blood or saliva is collected from children and parents, while medical records are reviewed for diagnostic information. RESULTS: So far, we have collected data from over 6,860 families (3,747 birth defects, 905 childhood cancers, and 2,208 controls). The types of birth defects vary widely and comprise malformations of the digestive, respiratory, and urogenital tracts as well as facial, cardiovascular, kidney, skeletal, and central nervous system anomalies. The most frequently occurring childhood cancer types are acute lymphatic leukemia, Hodgkin and non-Hodgkin lymphoma, Wilms' tumor, and brain and spinal cord tumors. Our genetic and/or epidemiologic studies have been focused on hypospadias, anorectal malformations, congenital anomalies of the kidney and urinary tract (CAKUT), and orofacial clefts. CONCLUSION: The large AGORA data- and biobank offers great opportunities for investigating genetic and nongenetic risk factors for disorders in children and is open to collaborative initiatives. Birth Defects Research (Part A) 106:675-684, 2016.
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