PGD data in the UK and Europe

Abstract

The purpose of data collection should be to provide accountability, assurance of safety and efficacy for patients and practitioners, promote best practice and suggest areas in which more improvements could be made. PGD outcomes have been collected in a variety of different ways by individual centres, professional bodies and regulatory agencies: it is a mandatory requirement of the HFEA to collect and make centre data publicly available, and data collection and publication has been one of the central objectives of the ESHRE PGD Consortium since its inception in 1997. This chapter explores the nature of these data, what is useful and what is not, and suggests possible future improvements. While acknowledging that many of the key points discussed are relevant to both PGS and PGD, this chapter will not specifically address the latter but focus on data collected for PGD for single-gene disorders and chromosomal aberrations.