Читать книгу New Concepts for Human Disorders of Sexual Development - Группа авторов - Страница 15

In summary, the European DSD registry is a live, security-oriented web-based platform that can act as a resource for research into a number of aspects of DSD. The future direction of the registry is to facilitate the collection of standardised data internationally, thereby, allowing collaborative research to be performed across the globe. The registry has already allowed access for local use to partners from numerous countries (including Argentina, the Czech Republic, Estonia, and Turkey). Its cornerstone is adherence to the highest standards of data security and information governance. The work on this project is still very much ongoing both from a software development and a clinical research/usage perspective. The work has demonstrated that development of advanced VREs is now realistic and moves beyond the ‘proof of concept in a software research centre’ to production use in a real world clinical and research environment. We continue to work in this space and refine the software solutions to meet a range of criteria deemed important for ethics, information governance and importantly for software guarantees, e.g. on availability. The lessons that have been learnt can be applied to international collaborative research in other rare conditions.