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

Q Medicine Birth defects research. Part A, Clinical and molecular teratology Pub Date : 2016-05-06 DOI:10.1002/bdra.23512

Iris A.L.M. van Rooij, Loes F.M. van der Zanden, Ernie M.H.F. Bongers, Kirsten Y. Renkema, Charlotte H.W. Wijers, Michelle Thonissen, Elisabeth M.J. Dokter, Carlo L.M. Marcelis, Ivo de Blaauw, Marc H.W.A. Wijnen, Peter M. Hoogerbrugge, Jos P.M. Bokkerink, Michiel F. Schreuder, Linda Koster-Kamphuis, Elisabeth A.M. Cornelissen, Livia Kapusta, Arno F.J. van Heijst, Kian D. Liem, Robert P.E. de Gier, Anne Marie Kuijpers-Jagtman, Ronald J.C. Admiraal, Stefaan J. Bergé, Jan Jaap van der Biezen, An Verdonck, Vincent Vander Poorten, Greet Hens, Jasmien Roosenboom, Marc R. Lilien, Tom P. de Jong, Paul Broens, Rene Wijnen, Alice Brooks, Barbara Franke, Han G. Brunner, Carine E.L. Carels, Nine V.A.M. Knoers, Wout F.J. Feitz, Nel Roeleveld

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引用次数: 35

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. © 2016 Wiley Periodicals, Inc.

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AGORA是一个关于出生缺陷和儿童癌症的数据和生物银行

背景:关于出生缺陷和儿童癌症的病因学研究对于制定预防措施至关重要，但往往需要大量的研究人群。因此，我们在荷兰建立了AGORA数据和生物库。在本研究中，我们描述了它的基本原理、设计和正在进行的数据收集。方法邀请诊断为和/或接受结构性出生缺陷或儿童癌症治疗的儿童及其父母参与AGORA数据和生物库。通过从市政登记处随机抽样来招募对照者。父母收到关于人口统计、家庭和怀孕史、健康状况、处方药物、生活方式以及在怀孕前和怀孕期间的职业暴露的问卷。此外，还收集儿童和父母的血液或唾液，同时审查医疗记录以获取诊断信息。到目前为止，我们收集了超过6860个家庭的数据(3747个出生缺陷，905个儿童癌症，2208个对照)。出生缺陷的类型差别很大，包括消化道、呼吸道和泌尿生殖道畸形，以及面部、心血管、肾脏、骨骼和中枢神经系统异常。最常见的儿童癌症类型是急性淋巴白血病、霍奇金淋巴瘤和非霍奇金淋巴瘤、威尔姆斯瘤、脑和脊髓肿瘤。我们的遗传和/或流行病学研究集中在尿道下裂、肛肠畸形、先天性肾和尿路异常(CAKUT)和口面裂。庞大的AGORA数据和生物库为研究儿童疾病的遗传和非遗传风险因素提供了巨大的机会，并对合作倡议持开放态度。出生缺陷研究(A辑)(06):675 - 684,2016。©2016 Wiley期刊公司

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