Developing an International Registry for Uterus Transplantation (IRUTx) : Promises and Challenges

Williams, Nicola and Hammond-Browning, Natasha (2020) Developing an International Registry for Uterus Transplantation (IRUTx) : Promises and Challenges. Human Reproduction, 35 (12). 2643–2649. ISSN 0268-1161

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Abstract

Uterus Transplantation is an experimental vascular composite allograft designed to provide women with absolute uterine factor infertility with the opportunity to gestate and give birth to their future offspring. The number of UTx procedures performed worldwide now stand at ≥ 70 and as the number of cases performed increases so too does the volume of the potential data that may be gathered to inform the development, practice, and regulation of UTx. Given the value of this data, and the challenges associated with keeping track of cases and outcomes where data remains unpublished and/or scattered, scientists and academics conducting research into UTx have increasingly called for the swift creation, implementation, and management of an international registry for Uterus Transplantation (IRUTx). This paper explores and provides practical guidance regarding the potential benefits the IRUTx may provide to stakeholders, as well as the legal and ethical challenges that its creation may pose in terms of dataset design, consent, privacy, researcher compliance, and governance.