Building a rare disease patient registry
On 17th September, 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.
The aim of our workshops is to enable patient groups to professionalise their work and develop their skills and knowledge which will in turn benefit rare disease patients themselves. Patient groups provide crucial support to their communities and many are run by people with rare diseases and their loved ones with limited funds. We recognise the important role they play in the lives of those with rare diseases and strive to give them the necessary tools to continue their work.
Con Hennessy, Managing Director, OpenAPP
Neil Bennett, Head of Research, Action Duchenne
Pete Chan, Head of Research and Analysis, RareMark
Sally Jeans, RUDY Participant