Findacure is delighted to announce its next patient group training workshop, ‘Building a rare disease patient registry’! We listened to your feedback from our survey about what you would like to see in our workshops and you overwhelmingly voted for registries. This workshop, which will be held on Tuesday 17th September at White & Case, London, will address a need in the rare disease community for more information on the research process. It will guide patient groups through developing a strategic approach to building a rare registry that is right for them. Sign up here.

What will be covered?

  • The basics – what is a registry, what is its purpose and what are the benefits?
  • What are the needs and priorities of different registry stakeholders?
  • What type of registry is right for you?
  • How to engage your community in your registry?
  • Handling data – what levels of consent are required for your registry? Who owns the data and what are your protocols for sharing information? What are the implications of GDPR on patient registries?

For more information on this workshop, please visit our events page