Create Your Registry Plan
Plan for Roadblocks
Any project is bound to face some roadblocks along the way. Create a list of things that might slow down your progress and include some ideas to move past the obstacles.
- Lack of time
- Lack of interest within the patient community
- Competing ideas over the direction of the registry
- Difficulty making decisions
- Existence of other registries for the disease
- Difficulties of working alongside a research group versus doing it by yourself
- Too many “cooks in the kitchen”
- Find others in your patient advocacy group to help share the workload.
- Use social media to create buzz by sharing stories, videos, infographics, and articles. Focus on the needs of the community and how your registry can address them.
- Work to stay unified by compromising and focusing on shared goals.
- Get the advice of other patient advocacy groups that have established similar registries.
- Define roles and responsibilities of registry staff.