The workshop will take place on Friday, 16th September 2016, from 2pm to 5:30pmin central London. The day will introduce what patient registries are and how they can beneficially support research development. The workshop will also feature three case studies from rare disease charities who have supported registries: either by setting them up themselves, supporting a researcher initiative, or supporting a pharmaceutical company’s registry. By the end of the day, delegates will have an improved understanding of registries and the different approaches patient groups can take to get involved in a registry for their own condition.
The final schedule for the day will be released in late July.
If you would like to attend, please sign up via our Eventbrite page.
If you have any questions, please email Flóra via firstname.lastname@example.org.