{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,8]],"date-time":"2026-01-08T21:42:38Z","timestamp":1767908558484,"version":"3.49.0"},"reference-count":25,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2016,5,6]],"date-time":"2016-05-06T00:00:00Z","timestamp":1462492800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Supported by the Radboud university medical center"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Birth Defects Research"],"published-print":{"date-parts":[[2016,8]]},"abstract":"<jats:sec><jats:title>BACKGROUND<\/jats:title><jats:p>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\u2010 and biobank in the Netherlands. In this study, we describe its rationale, design, and ongoing data collection.<\/jats:p><\/jats:sec><jats:sec><jats:title>METHODS<\/jats:title><jats:p>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\u2010 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>RESULTS<\/jats:title><jats:p>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\u2010Hodgkin lymphoma, Wilms\u2019 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>CONCLUSION<\/jats:title><jats:p>The large AGORA data\u2010 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\u2013684, 2016. \u00a9 2016 Wiley Periodicals, Inc.<\/jats:p><\/jats:sec>","DOI":"10.1002\/bdra.23512","type":"journal-article","created":{"date-parts":[[2016,5,6]],"date-time":"2016-05-06T09:37:38Z","timestamp":1462527458000},"page":"675-684","source":"Crossref","is-referenced-by-count":39,"title":["AGORA, a data\u2010 and biobank for birth defects and childhood cancer"],"prefix":"10.1002","volume":"106","author":[{"given":"Iris A.L.M.","family":"van Rooij","sequence":"first","affiliation":[{"name":"Department for Health Evidence Radboud Institute for Health Sciences, Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Loes F.M.","family":"van der Zanden","sequence":"additional","affiliation":[{"name":"Department for Health Evidence Radboud Institute for Health Sciences, Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ernie M.H.F.","family":"Bongers","sequence":"additional","affiliation":[{"name":"Department of Human Genetics Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirsten Y.","family":"Renkema","sequence":"additional","affiliation":[{"name":"Department of Genetics University Medical Center Utrecht The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte H.W.","family":"Wijers","sequence":"additional","affiliation":[{"name":"Department for Health Evidence Radboud Institute for Health Sciences, Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Thonissen","sequence":"additional","affiliation":[{"name":"Department of Orthodontics and Craniofacial Biology Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elisabeth M.J.","family":"Dokter","sequence":"additional","affiliation":[{"name":"Department for Health Evidence Radboud Institute for Health Sciences, Radboud university medical center Nijmegen The Netherlands"},{"name":"Department of Plastic Surgery and Hand Surgery Medical Centre Leeuwarden Leeuwarden the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlo L.M.","family":"Marcelis","sequence":"additional","affiliation":[{"name":"Department of Human Genetics Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ivo","family":"de Blaauw","sequence":"additional","affiliation":[{"name":"Department of Surgery Pediatric Surgery, Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"},{"name":"Department of Pediatric Surgery Erasmus Medical Center Rotterdam The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marc H.W.A.","family":"Wijnen","sequence":"additional","affiliation":[{"name":"Department of Surgery Pediatric Surgery, Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter M.","family":"Hoogerbrugge","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jos P.M.","family":"Bokkerink","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michiel F.","family":"Schreuder","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linda","family":"Koster\u2010Kamphuis","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elisabeth A.M.","family":"Cornelissen","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Livia","family":"Kapusta","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arno F.J.","family":"van Heijst","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kian D.","family":"Liem","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert P.E.","family":"de Gier","sequence":"additional","affiliation":[{"name":"Department of Urology Pediatric Urology, Radboudumc Amalia Children's Hospital Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne Marie","family":"Kuijpers\u2010Jagtman","sequence":"additional","affiliation":[{"name":"Department of Orthodontics and Craniofacial Biology Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ronald J.C.","family":"Admiraal","sequence":"additional","affiliation":[{"name":"Department of Otorhinolaryngology Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stefaan J.","family":"Berg\u00e9","sequence":"additional","affiliation":[{"name":"Department of Oral and Maxillofacial surgery Radboud university medical center Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jan Jaap","family":"van der Biezen","sequence":"additional","affiliation":[{"name":"Department of Plastic Surgery and Hand Surgery Medical Centre Leeuwarden Leeuwarden the Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"An","family":"Verdonck","sequence":"additional","affiliation":[{"name":"Department of Oral Health Sciences\u2010Orthodontics and Leuven Cleft Lip and Palate Team KU Leuven, University Hospitals KU Leuven Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vincent","family":"Vander Poorten","sequence":"additional","affiliation":[{"name":"Department of Otorhinolaryngology, Head and Neck Surgery and 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