AGORA, a data- and biobank for birth defects and childhood cancer

Autor: Rooij, I.A.L.M. van, Zanden, L.F.M. van der, Bongers, E.M., Renkema, K.Y., Wijers, C.H., Thonissen, M., Dokter, E.M., Marcelis, C.L., Blaauw, I. de, Wijnen, M.H.W.A., Hoogerbrugge, P.M., Bökkerink, J.P., Schreuder, M.F., Koster-Kamphuis, L., Cornelissen, E.A., Kapusta, L., Heijst, A.F.J. van, Liem, K.D., Gier, R.P. de, Kuijpers-Jagtman, A.M., Admiraal, R.J., Berge, S.J., Biezen, J.J. van der, Verdonck, A., Poorten, V. Van der, Hens, G., Roosenboom, J., Lilien, M.R., Jong, T.P. de, Broens, P., Wijnen, R., Brooks, A., Franke, B., Brunner, H.G., Carels, C.E., Knoers, N.V.A.M., Feitz, W.F., Roeleveld, N.
Přispěvatelé: Paediatric Surgery, Urology, Paediatric Urology, Pediatric Surgery, Clinical Genetics
Jazyk: angličtina
Rok vydání: 2016
Předmět:
Adult
Male
Databases
Factual
etiology
Vascular damage Radboud Institute for Health Sciences [Radboudumc 16]
Sensory disorders Donders Center for Medical Neuroscience [Radboudumc 12]
Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18]
HYPOSPADIAS
Congenital Abnormalities
SDG 3 - Good Health and Well-being
Pregnancy
Risk Factors
Neoplasms
Surveys and Questionnaires
Journal Article
cancer
Humans
genetics
Child
Life Style
Biological Specimen Banks
RISK
ENVIRONMENT
Neurodevelopmental disorders Donders Center for Medical Neuroscience [Radboudumc 7]
congenital malformations
environment
risk factor
Metabolic Disorders Radboud Institute for Health Sciences [Radboudumc 6]
Infant
Newborn
Infant
ASSOCIATION
Reconstructive and regenerative medicine Radboud Institute for Health Sciences [Radboudumc 10]
Reconstructive and regenerative medicine Radboud Institute for Molecular Life Sciences [Radboudumc 10]
Renal disorders Radboud Institute for Molecular Life Sciences [Radboudumc 11]
Case-Control Studies
Child
Preschool
Prenatal Exposure Delayed Effects
CONGENITAL ANORECTAL-MALFORMATIONS
Female
Renal disorders Radboud Institute for Health Sciences [Radboudumc 11]
Rare cancers Radboud Institute for Health Sciences [Radboudumc 9]
Zdroj: Birth defects research. Part A, Clinical and molecular teratology, 106(8), 675-684. Wiley-Liss Inc.
Birth Defects Research Part A-Clinical and Molecular Teratology, 106(8), 675-684. Wiley-Liss Inc.
Birth Defects Research Part A-Clinical and Molecular Teratology, 106, 675-84
Birth Defects Research Part A-Clinical and Molecular Teratology, 106(8), 675–684. Wiley-Liss Inc.
Birth Defects Research. Part A: Clinical and Molecular Teratology, 106(8), 675-684. Wiley-Blackwell
Birth Defects Research Part A-Clinical and Molecular Teratology, 106, 8, pp. 675-84
ISSN: 1542-0752
Popis: Contains fulltext : 167851.pdf (Publisher’s version ) (Open Access) 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. (c) 2016 Wiley Periodicals, Inc.
Databáze: OpenAIRE
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