Building a rare disease patient registry

On 17th September 2019, Findacure ran a workshop in London entitled ‘Building a rare disease patient registry’. The event was comprised of talks about registries from a range of stakeholders across the rare disease field, including people working in industry and rare disease patients themselves who have gained expertise in the area.

Topics covered the basics of establishing a registry such as ‘what is a registry?’ and ‘what is its purpose?’, as well as more complex questions such as ‘what are the implications of GDPR on patient registries?’ Registries are a subject which many people in the community want to get to grips with, as the incentives of establishing a registry for a particular rare disease are numerous, yet also feel perplexed by. An obstacle many people face is that there is not enough transparency and easily-digestible information out there about registries, particularly from their clinicians. This workshop tried to address this demand after the topic of registries came out top in a poll we conducted via social media.