PATIENT-OWNED DATA TO ACCELERATE TREATMENTS FOR RARE DISEASE
The CACNA1A Foundation has partnered with RARE-X to build a Data Collection Program for the CACNA1A community. By increasing access to research-ready data, we hope to accelerate the discovery of ground-breaking treatments for CACNA1A!
We chose to partner with RARE-X because we hope that by leveraging RARE-X’s data collection platform in conjunction with other rare disease communities, we can increase the likelihood that CACNA1A will be included in cross-disease research.
The CACNA1A Data Collection Program will …
Inform researchers how CACNA1A-related disorders change over time
Enable better data to design and use in clinical trials
Provide 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
There is no cost to participate.
THE ADVANTAGES OF PARTICIPATING IN RARE-X
If eligible, you may have the chance to participate in clinical trials
Reach more researchers worldwide - more eyes on data
Ability to connect with other patient organizations that present similarly to ours
Ability to update a change in symptoms at any time
Ability to manage who uses your data
Speeds up research and drug development
PLEASE READ: We want to emphasize that the CACNA1A + RARE-X Data Collection Program does not replace the CACNA1A Natural History Study (NHS) being conducted by Dr. Wendy Chung and her team at Columbia University.
It provides an additional opportunity to advance research on our rare disease.
Enrolling in the CACNA1A Natural History Study is still one of the most important things you can do to help the CACNA1A community and advance research. Click here to learn more about our NHS.
RARE-X is a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology. RARE-X’s mission is to serve patients, and drive research towards therapeutic development.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support:
patients in data collection, structuring and responsible sharing,
clinicians in accelerating diagnosis and improving and tracking health outcomes,
researchers and biopharma with the data they need to identify, develop and track the impact of breakthrough treatments and cures.
Since RARE-X is a nonprofit, there is no cost to you or the CACNA1A community.
