title: AGORA, a data- and biobank for birth defects and childhood cancer.
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.
  
  
  CONCLUSIONS
  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. © 2016 Wiley Periodicals, Inc.
authors.affiliation: Department for Health Evidence, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Iris A L M
authors.initials: IA
authors.lastname: van Rooij
authors.affiliation: Department for Health Evidence, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Loes F M
authors.initials: LF
authors.lastname: van der Zanden
authors.affiliation: Department of Human Genetics, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Ernie M H F
authors.initials: EM
authors.lastname: Bongers
authors.affiliation: Department of Genetics, University Medical Center Utrecht, The Netherlands.
authors.forename: Kirsten Y
authors.initials: KY
authors.lastname: Renkema
authors.affiliation: Department for Health Evidence, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Charlotte H W
authors.initials: CH
authors.lastname: Wijers
authors.affiliation: Department of Orthodontics and Craniofacial Biology, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Michelle
authors.initials: M
authors.lastname: Thonissen
authors.affiliation: Department for Health Evidence, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.|Department of Plastic Surgery and Hand Surgery, Medical Centre Leeuwarden, Leeuwarden, the Netherlands.
authors.forename: Elisabeth M J
authors.initials: EM
authors.lastname: Dokter
authors.affiliation: Department of Human Genetics, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Carlo L M
authors.initials: CL
authors.lastname: Marcelis
authors.affiliation: Department of Surgery, Pediatric Surgery, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.|Department of Pediatric Surgery, Erasmus Medical Center, Rotterdam, The Netherlands.
authors.forename: Ivo
authors.initials: I
authors.lastname: de Blaauw
authors.affiliation: Department of Surgery, Pediatric Surgery, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Marc H W A
authors.initials: MH
authors.lastname: Wijnen
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Peter M
authors.initials: PM
authors.lastname: Hoogerbrugge
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Jos P M
authors.initials: JP
authors.lastname: Bokkerink
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Michiel F
authors.initials: MF
authors.lastname: Schreuder
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Linda
authors.initials: L
authors.lastname: Koster-Kamphuis
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Elisabeth A M
authors.initials: EA
authors.lastname: Cornelissen
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Livia
authors.initials: L
authors.lastname: Kapusta
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Arno F J
authors.initials: AF
authors.lastname: van Heijst
authors.affiliation: Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Kian D
authors.initials: KD
authors.lastname: Liem
authors.affiliation: Department of Urology, Pediatric Urology, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Robert P E
authors.initials: RP
authors.lastname: de Gier
authors.affiliation: Department of Orthodontics and Craniofacial Biology, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Kuijpers-Jagtman
authors.affiliation: Department of Otorhinolaryngology, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Ronald J C
authors.initials: RJ
authors.lastname: Admiraal
authors.affiliation: Department of Oral and Maxillofacial surgery, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Stefaan J
authors.initials: SJ
authors.lastname: Bergé
authors.affiliation: Department of Plastic Surgery and Hand Surgery, Medical Centre Leeuwarden, Leeuwarden, the Netherlands.
authors.forename: Jan Jaap
authors.initials: JJ
authors.lastname: van der Biezen
authors.affiliation: Department of Oral Health Sciences-Orthodontics and Leuven Cleft Lip and Palate Team, KU Leuven, University Hospitals KU Leuven, Belgium.
authors.forename: An
authors.initials: A
authors.lastname: Verdonck
authors.affiliation: Department of Otorhinolaryngology, Head and Neck Surgery and Leuven Cleft Lip and Palate Team, University Hospitals KU Leuven, Belgium.
authors.forename: Vincent
authors.initials: V
authors.lastname: Vander Poorten
authors.affiliation: Department of Otorhinolaryngology, Head and Neck Surgery and Leuven Cleft Lip and Palate Team, University Hospitals KU Leuven, Belgium.
authors.forename: Greet
authors.initials: G
authors.lastname: Hens
authors.affiliation: Department of Neurosciences, Experimental Otorhinolaryngology, KU Leuven, Belgium.
authors.forename: Jasmien
authors.initials: J
authors.lastname: Roosenboom
authors.affiliation: Department of Pediatric Nephrology, Wilhelmina Children's Hospital, University Medical Center Utrecht, The Netherlands.
authors.forename: Marc R
authors.initials: MR
authors.lastname: Lilien
authors.affiliation: Department of Pediatric Urology, Wilhelmina Children's Hospital, University Medical Center Utrecht, The Netherland.|Department of Pediatric Urology, Emma Children's Hospital, Academic Medical Center Amsterdam, The Netherlands.
authors.forename: Tom P
authors.initials: TP
authors.lastname: de Jong
authors.affiliation: Department of Surgery, Division of Pediatric Surgery, University Medical Center Groningen, Groningen, The Netherlands.
authors.forename: Paul
authors.initials: P
authors.lastname: Broens
authors.affiliation: Department of Pediatric Surgery, Erasmus Medical Center, Rotterdam, The Netherlands.
authors.forename: Rene
authors.initials: R
authors.lastname: Wijnen
authors.affiliation: Department of Clinical Genetics, Erasmus Medical Centre, Rotterdam, The Netherlands.
authors.forename: Alice
authors.initials: A
authors.lastname: Brooks
authors.affiliation: Department of Human Genetics, Radboud university medical center, Nijmegen, The Netherlands.|Department of Psychiatry, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Barbara
authors.initials: B
authors.lastname: Franke
authors.affiliation: Department of Human Genetics, Radboud university medical center, Nijmegen, The Netherlands.
authors.forename: Han G
authors.initials: HG
authors.lastname: Brunner
authors.affiliation: Department of Orthodontics and Craniofacial Biology, Radboud university medical center, Nijmegen, The Netherlands.|Department of Oral Health Sciences-Orthodontics and Leuven Cleft Lip and Palate Team, KU Leuven, University Hospitals KU Leuven, Belgium.
authors.forename: Carine E L
authors.initials: CE
authors.lastname: Carels
authors.affiliation: Department of Genetics, University Medical Center Utrecht, The Netherlands.
authors.forename: Nine V A M
authors.initials: NV
authors.lastname: Knoers
authors.affiliation: Department of Urology, Pediatric Urology, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Wout F J
authors.initials: WF
authors.lastname: Feitz
authors.affiliation: Department for Health Evidence, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.|Department of Pediatrics, Radboudumc Amalia Children's Hospital, Nijmegen, The Netherlands.
authors.forename: Nel
authors.initials: N
authors.lastname: Roeleveld
mesh_terms: D000328:Adult; D018070:Biological Specimen Banks / Q000458:organization & administration*; D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D000013:Congenital Abnormalities / Q000145:classification / Q000175:diagnosis* / Q000235:genetics / Q000473:pathology; D016208:Databases, Factual; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008019:Life Style; D008297:Male; D009369:Neoplasms / Q000145:classification / Q000175:diagnosis* / Q000235:genetics / Q000473:pathology; D011247:Pregnancy; D011297:Prenatal Exposure Delayed Effects / Q000145:classification / Q000175:diagnosis*; D012307:Risk Factors; D011795:Surveys and Questionnaires
keywords: cancer; congenital malformations; environment; etiology; genetics; risk factor