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.
Section I: Creating Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)
The FAIR Guiding Principles for scientific data management and stewardship 2016 Article in Nature: Scientific Data (link)
Rare disease registries: potential applications towards impact on development of new drug treatments 2018 Article in Orphanet Journal of Rare Diseases (link)
Rare Toolkit: Rare Disease Registries: Advancing Disease Understanding, Treatments, and Cures Global Genes (link)
PCORI Training: A Program for Rare Disease Patient Advocates Patient-Centered Outcomes Research Institute (PCORI) (link)
World Federation of Hemophilia Guide to Developing a National Patient Registry World Federation of Hemophilia (WFH) (link)
2013 Policy Fact Sheet - Rare Disease Patient Registries EURORDIS Rare Diseases Europe (link)
Develop a Governance Plan
Recommendations for Improving the Quality of Rare Disease Registries 2018 Published Article
Section II: Legal and Ethical Considerations for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)