RARE-X Patient Registry

The Jack Bear Foundation is partnering with RARE-X, a 501(c)(3) nonprofit, to build a Data Collection Program for SCAR-15 families. When you participate in the SCAR-15 Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.

The Jack Bear Foundation is building the SCAR-15 Data Collection Program to …

  • Inform researchers how SCAR-15 changes over time

  • Enable better data to use in clinical trials

  • Give patients the opportunity to participate in clinical trials

  • Reduce the time it takes to study new medicines

  • Speed up the time to get treatments to patients

  • Enable the use of data as a placebo (instead of actual patients) in a clinical trial

Since RARE-X is a nonprofit, there is no cost to you or the SCAR-15 community. Our goal is to make the process as easy as possible for you. By clicking on the link below, you can learn more about this one-of-a-kind Data Collection Program and begin the first step in making your patient information available to researchers.

To learn more about creating the parent and patient profile in the RARE-X platform registry, please watch our video.