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The Role of International Databases in Understanding the Aetiology and Consequences of Differences/Disorders of Sex Development

1
Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow G51 4TF, UK
2
Office for Rare Conditions, University of Glasgow G51 4TF, UK
*
Author to whom correspondence should be addressed.
Int. J. Mol. Sci. 2019, 20(18), 4405; https://doi.org/10.3390/ijms20184405
Received: 30 July 2019 / Revised: 1 September 2019 / Accepted: 6 September 2019 / Published: 7 September 2019
(This article belongs to the Special Issue Molecular Aspects of Sex Development in Mammals: New Insight)
The International Disorders of Sex Development (I-DSD) and International Congenital Adrenal Hyperplasia registry (I-CAH) Registries were originally developed over 10 years ago and have since supported several strands of research and led to approximately 20 peer-reviewed publications. In addition to acting as an indispensable tool for monitoring clinical and patient-centered outcomes for improving clinical practice, the registries can support a wide nature of primary and secondary research and can also act as a platform for pharmacovigilance, given their ability to collect real world patient data within a secure, ethics approved virtual research environment. The challenge for the future is to ensure that the research community continues to use the registries to improve our understanding of Disorders of Sex Development (DSD). View Full-Text
Keywords: DSD; networks; registries DSD; networks; registries
MDPI and ACS Style

Ali, S.R.; Lucas-Herald, A.; Bryce, J.; Ahmed, S.F. The Role of International Databases in Understanding the Aetiology and Consequences of Differences/Disorders of Sex Development. Int. J. Mol. Sci. 2019, 20, 4405.

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