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

• Published in: International journal of molecular sciences Vol. 20; no. 18; p. 4405
• Main Authors: Ali, Salma Rashid, Lucas-Herald, Angela, Bryce, Jillian, Ahmed, Syed Faisal
• Format: Journal Article
• Language: English
• Published: Switzerland MDPI AG 07.09.2019; MDPI
• Subjects: Androgen receptors; Androgens; Apolipoproteins; Collaboration; Congenital diseases; Differences of sex development; Disease; Disorders of Sex Development - etiology; DSD; Epidemiology; Etiology; Female; Humans; International Cooperation; Male; Mutation; networks; Patient-Centered Care; Peer Review, Research; Phenotypes; Project management; R&D; Registries; Research & development; Review; Transcription; DSD; networks; registries
• ISSN: 1422-0067; 1661-6596; 1422-0067
• DOI: 10.3390/ijms20184405

The International Disorders of Sex Development (I-DSD) and International Congenital AdrenalHyperplasia 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).