Requirements for a multicentric multidisciplinary registry on patients with disorders of sex development

Olaf Hiort; Lutz Wünsch; Martine Cools; Leendert Looijenga; Peter Cuckow

doi:10.1016/j.jpurol.2012.09.004

Requirements for a multicentric multidisciplinary registry on patients with disorders of sex development

Olaf Hiort^*, Lutz Wünsch, Martine Cools, Leendert Looijenga, Peter Cuckow

^*Corresponding author for this work

17 Citations (Scopus)

Abstract

Disorders of Sexual Development (DSDs) are a group of rare to very rare congenital anomalies of the genito-urinary tract of genetic and endocrine causes. Recently, an international database I-DSD was successfully implemented to register patients with DSD and to provide the basis for epidemiologic, genetic, and clinical research. This tool needs to be adjusted and supplemented with additional modules in order to better assess the anatomical basis of DSD as well as to monitor risk factors such as gonadal histology. A proposal for the additional information to be obtained is discussed.

Original language	English
Journal	Journal of Pediatric Urology
Volume	8
Issue number	6
Pages (from-to)	624-628
Number of pages	5
ISSN	1477-5131
DOIs	https://doi.org/10.1016/j.jpurol.2012.09.004
Publication status	Published - 01.12.2012

Funding

OH has received funding from the European Community's Seventh Framework Programme (FP7/2007-2013) under grant agreement no 201444 (EuroDSD). MC is supported by the Flanders' Research Foundation (FWO)

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1016/j.jpurol.2012.09.004

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AU - Wünsch, Lutz

AU - Cools, Martine

AU - Looijenga, Leendert

AU - Cuckow, Peter

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AB - Disorders of Sexual Development (DSDs) are a group of rare to very rare congenital anomalies of the genito-urinary tract of genetic and endocrine causes. Recently, an international database I-DSD was successfully implemented to register patients with DSD and to provide the basis for epidemiologic, genetic, and clinical research. This tool needs to be adjusted and supplemented with additional modules in order to better assess the anatomical basis of DSD as well as to monitor risk factors such as gonadal histology. A proposal for the additional information to be obtained is discussed.

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ER -

Requirements for a multicentric multidisciplinary registry on patients with disorders of sex development

Abstract

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UN SDGs

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