The CRID (Clinical Research ID)
2023-2024 Campaign 4CASK Goal: 100 CASK cases with a CRID
The Clinical Research ID (CRID) is a revolutionary service that empowers patients to take control of their own research data. CRID is a service that enables patients involved in clinical research the opportunity to create their own Unique Universal ID. You create your CRID (for yourself and/or your child) and you decide which researchers to share it with.
By sharing your CRID, researchers can then reuse, merge and share your research data (without using your personally identifiable information. It's a free service and they never sell or share your information with anyone. Keep scrolling to see 4 helpful videos as you learn why this resource is so powerful.
Video - Gerry Explains the CRID
In this video, you can hear more about the CRID, from it’s creator as presented in the 2023 CASK Gene Summit.
Video - GenomeConnect on the Importance of Data Sharing
In this video, you can see one very general example of how data sharing can be helpful in the rare disease industry, as presented by GenomeConnect’s Juliann Savatt at the 2023 CASK Gene Summit
Video - Konark on How Data can be Helpful to His Work
In this video, you can see one example of how data sharing can be helpful to CASK research specifically, as presented by Konark Mukherjee at the 2023 CASK Gene Summit.
Video - About the CASK Data Sharing Program
In this video, you can see an overview of how the CASK Registry will be supporting many options for data sharing.
NOTE: the data sharing component is OPTIONAL. If you have not specifically chosen to participate in data sharing, then the information you provide for the CASK Registry and CASK Natural History Studies is not shared.
As data sharing opportunities are created, patients and parents will be given the opportunity to choose data sharing with specific categories of research across the rare disease industry, or just with specific databases, or even just with specific researchers.
The goal is to meet you where you are - to maximize every opportunity you want to share your data, while also limiting it for those who would rather not share this information outside of CASK Gene Foundation, as a patient advocate organization.