Patient registries can be a powerful tool. They can help researchers:
In discussions with NIH's Office of Rare Diseases Research (ORDR) on establishing an APBD patient registry, here is a recap of their thoughts:
- The process lends itself to developing a comfort level with a registry provider that will give the best product
- The selected solution should provide access to de-identified information and the ability to search and analyze the data
- The setup should facilitate the ability to provide de-identified data to the Global Rare Diseases Patient Registry and Data Repository (GRDR) established by NIH. This may result in leading other potential patients to our organization.
- Finalized patient registry questions can be shared with NIH ORDR.
- ORDR has developed an informed consent template that can be used in establishing APBD registry
What your donation will fund:
Annual maintenance fee $15,000
Naming opportunity available