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

被引:33
|
作者
van Rooij, Iris A. L. M. [1 ]
van der Zanden, Loes F. M. [1 ]
Bongers, Ernie M. H. F. [2 ]
Renkema, Kirsten Y. [3 ]
Wijers, Charlotte H. W. [1 ]
Thonissen, Michelle [4 ]
Dokter, Elisabeth M. J. [1 ,5 ]
Marcelis, Carlo L. M. [2 ]
de Blaauw, Ivo [6 ,7 ]
Wijnen, Marc H. W. A. [6 ]
Hoogerbrugge, Peter M. [8 ]
Bokkerink, Jos P. M. [8 ]
Schreuder, Michiel F. [8 ]
Koster-Kamphuis, Linda [8 ]
Cornelissen, Elisabeth A. M. [8 ]
Kapusta, Livia [8 ]
van Heijst, Arno F. J. [8 ]
Liem, Kian D. [8 ]
de Gier, Robert P. E. [9 ]
Kuijpers-Jagtman, Anne Marie [4 ]
Admiraal, Ronald J. C. [10 ]
Berge, Stefaan J. [11 ]
van der Biezen, Jan Jaap [5 ]
Verdonck, An [12 ,13 ]
Vander Poorten, Vincent [14 ,15 ]
Hens, Greet [14 ,15 ]
Roosenboom, Jasmien [16 ]
Lilien, Marc R. [17 ]
de Jong, Tom P. [18 ,19 ]
Broens, Paul [20 ]
Wijnen, Rene [7 ]
Brooks, Alice [21 ]
Franke, Barbara [2 ,22 ]
Brunner, Han G. [2 ]
Carels, Carine E. L. [4 ,12 ,13 ]
Knoers, Nine V. A. M. [3 ]
Feitz, Wout F. J. [9 ]
Roeleveld, Nel [1 ,8 ]
机构
[1] Radboud Univ Nijmegen, Radboud Inst Hlth Sci, Dept Hlth Evidence, Med Ctr, NL-6500 HB Nijmegen, Netherlands
[2] Radboud Univ Nijmegen, Dept Human Genet, Med Ctr, NL-6500 HB Nijmegen, Netherlands
[3] Univ Med Ctr Utrecht, Dept Genet, Utrecht, Netherlands
[4] Radboud Univ Nijmegen, Dept Orthodont & Craniofacial Biol, Med Ctr, NL-6500 HB Nijmegen, Netherlands
[5] Med Ctr Leeuwarden, Dept Plast Surg & Hand Surg, Leeuwarden, Netherlands
[6] Radboudumc Amalia Childrens Hosp, Dept Surg, Pediat Surg, Nijmegen, Netherlands
[7] Erasmus MC, Dept Pediat Surg, Rotterdam, Netherlands
[8] Radboudumc Amalia Childrens Hosp, Dept Pediat, Nijmegen, Netherlands
[9] Radboudumc Amalia Childrens Hosp, Dept Urol, Pediat Urol, Nijmegen, Netherlands
[10] Radboud Univ Nijmegen, Dept Otorhinolaryngol, Med Ctr, NL-6500 HB Nijmegen, Netherlands
[11] Radboud Univ Nijmegen, Dept Oral & Maxillofacial Surg, Med Ctr, NL-6500 HB Nijmegen, Netherlands
[12] Katholieke Univ Leuven, Univ Hosp KU Leuven, Dept Oral Hlth Sci Orthodont, Leuven, Belgium
[13] Katholieke Univ Leuven, Univ Hosp KU Leuven, Leuven Cleft Lip & Palate Team, Leuven, Belgium
[14] Univ Hosp KU Leuven, Dept Otorhinolaryngol Head & Neck Surg, Leuven, Belgium
[15] Univ Hosp KU Leuven, Leuven Cleft Lip & Palate Team, Leuven, Belgium
[16] Katholieke Univ Leuven, Dept Neurosci, Expt Otorhinolaryngol, Leuven, Belgium
[17] Univ Med Ctr Utrecht, Wilhelmina Childrens Hosp, Dept Pediat Nephrol, Utrecht, Netherlands
[18] Univ Med Ctr Utrecht, Wilhelmina Childrens Hosp, Dept Pediat Urol, Utrecht, Netherlands
[19] Emma Childrens Hosp, Acad Med Ctr Amsterdam, Dept Pediat Urol, Amsterdam, Netherlands
[20] Univ Groningen, Univ Med Ctr Groningen, Div Pediat Surg, Dept Surg, Groningen, Netherlands
[21] Erasmus MC, Dept Clin Genet, Rotterdam, Netherlands
[22] Radboud Univ Nijmegen, Med Ctr, Dept Psychiat, NL-6500 HB Nijmegen, Netherlands
关键词
etiology; cancer; congenital malformations; environment; genetics; risk factor; ENVIRONMENT; ETIOLOGY;
D O I
10.1002/bdra.23512
中图分类号
Q [生物科学];
学科分类号
07 ; 0710 ; 09 ;
摘要
BACKGROUNDResearch 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. METHODSChildren 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. RESULTSSo 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. CONCLUSIONThe 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.
引用
收藏
页码:675 / 684
页数:10
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