Kinderurologie en etiologie: Radboudumc AGORA data- en biobank

Introduction:: The research into the question ‘why does my child have this anomaly?’, or the aetiology of paediatric urology anomalies, started in 2002. For this purpose a project plan was submitted to the Internal Review Board on Human Studies to collect blood and additional information with a time schedule of 25 years. These data are currently stored in the Radboudumc AGORA data- en biobank.

Methods:: The basic collection of the Radboudumc AGORA data- and biobank data consists of the clinical diagnostic information, questionnaires and genetic material. To collect, use and distribute these data and materials an information brochure, informed consent forms, a collaboration contract, a study request form and a material transfer agreement (MTA) are part of the project. The AGORA program is a collaboration between clinical departments, epidemiology and genetics.

Results:: In 2014 there is a collection of biobank data of 1,836 urological and 616 uro-nefrological patients. Most research has been performed into the anomaly hypospadias and recently an international collaboration concerning these patients was established. Furthermore studies were performed concerning undescended testis, vesico-ureteral reflux and bladder exstrophy. A summary of the different publications is hereby presented.

Conclusion:: Different studies have been performed concerning the etiological aspects of hypospadias from which known and new findings were discovered. Currently, the aetiology cannot be totally explained by the environmental and genetic factors found, but step by step new associations are being found. In small studies and within (inter)national collaborations new results were also found for undescended testis, vesico-ureteral reflux and bladder exstrophy. For this kind of studies a pleasant and productive collaboration with all people involved, clear appointments and contracts, and good logistic procedures play an essential role.