The UK Teratology Information Service (UKTIS) collects pregnancy outcome data from healthcare professionals by attempting to follow up enquiries made to our telephone advisory service. In addition, UKTIS also has an online registry for women to report details of their own pregnancies, on the BUMPs (best use of medicines in pregnancy) website (www.medicinesinpregnancy.org). Information collected from both healthcare providers and women provides the basis for future patient risk assessments and contributes to surveillance of the safety of medications and chemicals in pregnancy.

For many medicines, especially those that are new or used rarely in women of childbearing age, it can take many years for single organisations like UKTIS to collect enough data to produce evidence-based pregnancy safety information. In order to provide robust information more rapidly, we often collaborate with other Teratology Information Services (TISs) around the world. This includes contributing to European Network of Teratology Services (ENTIS) studies, in which data from different TISs is combined and analysed (https://www.entis-org.eu/category/entis-study).

Unfortunately, the available data relating to medicine use in pregnancy is currently very fragmented. This is because it is collected and stored in different ways by groups including manufacturers, researchers, clinicians, and government bodies. Combining or comparing data from these different sources can therefore be very difficult.  In 2019 UKTIS partnered with 87 other organisations, from 22 countries, for the ConcePTION project. The overall goal is to tackle many of the research gaps related to medicine use in pregnant women. One of the aims of the project is to develop common standards and tools for pregnancy data collection and analysis. This should facilitate the combination of data from multiple sources, allowing much larger numbers of exposed pregnancies to be analysed. The hope is that conclusions on the safety of medicine use during pregnancy will be able to be drawn more rapidly, ultimately allowing us to provide information in a more timely fashion to women and their healthcare providers.

We look forward to updating you in future blogs with the work we are contributing to ConcePTION.  In the meantime, if you are pregnant or a healthcare provider, YOU can help us with the aims of ConcePTION.   We want to raise awareness of the importance of collecting pregnancy data.  If you are pregnant, please create a BUMPS record and let us know about medicine use (if any) and keep an eye out for reminders to update your record (please check your junk email folder).  If you are a healthcare provider, please let women know about our patient information leaflets and that they can register their pregnancy on our website, www.medicinesinpregnancy.org.