KARES + RARE-X DATA COLLECTION PROGRAM

Secure patient-owned data collection to accelerate KDM5C research

What is the RARE-X Data Collection Program?

The KARES community has partnered with RARE-X to build a Data Collection Program for the KDM5C community. When you participate in the KDM5C Data Collection Program, you’ll help more researchers around the world gain access to KDM5C patient data. By increasing access to research-ready data, we hope to accelerate research and treatments for individuals affected by KDM5C variants!

We hope to leverage the RARE-X Data Collection Program in conjunction with other rare disease communities to increase the likelihood that KDM5C will be included in cross-disease research. The KDM5C Data Collection Program will:

  • Inform researchers how KDM5C-related disorders change over time

  • Enable better data to use in future potential clinical trials

  • Provide patients the opportunity to participate in future clinical trials

  • Accelerate targeting new treatments for patients

  • Reduce the time it takes to study new medicines

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

All data in the KDM5C + RARE-X Data Collection Program is patient-owned. Patients or caregivers have the ability to update a change in symptoms at any time and to manage who uses your data. RARE-X technology (powered by Matrix) allows researchers from around the globe to access standardized and deidentified patient data.

Coming soon!

Learn more by watching the KARES + RARE-X Launch Party, a one-hour webinar on the KDM5C Data Collection Program.

About the RARE-X Platform

RARE-X is a program of Global Genes, a 501(c)(3) nonprofit dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. RARE-X was 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, and

    • 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 program, there is no cost to you or the KARES / KDM5C community.

Why participate in Data Collection?