September 2018

Patient registries are broadly recognised as a critical underpinning for improving healthcare through research. As an umbrella organisation for many medical research charities intimately involved in this pursuit, registries are a reoccurring theme. Despite their importance however, in too many cases, registries remain a thing of the future.

The challenges to developing registries are large but getting less, as technology develops and expertise is shared. However, practical and simple guidance on registry development is still very limited. With this in mind, we organised a workshop, entitled ‘The Nuts and Bolts of Patient Registries’, for our member charities and other guests in April 2018. The aim of the workshop was to facilitate jargon-free, practical discussion on all aspects of registry development and management. Emerging from the workshop and our work in the area of registries is this guide. It has been written with patient organisations foremost in mind but should be much more widely useful.

We have brought together the views of those at the workshop to shape a vision for registries in Ireland, central to which is to establish a National Federation of Registries. The final section outlines this vision in more detail.