Patient Owned Data
The HypoPARA community is partnering with RARE-X, a 501(c)(3) nonprofit, to build a Patient Owned Data Collection Program for HypoPARA families. When you participate in the HypoPARAthyroidism Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
Contribute to Hypopara Research Efforts
The HypoPARA Community is building the HypoPARA Patient Owned Data Collection Program to:
- Inform researchers how HypoPARA 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
Join The Program
The HypoPARA Patient Owned Data Collection Program will be patient-owned but enabled by RARE-X technology. All data governance, consent, support, and data security will be put in place by RARE-X. HypoPARA families will benefit from a streamlined process for collecting research-ready data in a phased approach.
Resources
Watch our video with more information on the program. Please have patience at the beginning, there were a few glitches. Please watch it as it will explain what and how we are doing this Patient Powered Data collection. Your contribution is greatly appreciated! Follow RARE-X on social media for news and updates.
Meet the Data Collection Program (DCP) Team
COMING SOON
Rare-x program director
Sherry Tickle
Administrator, Natpara Support, DCP Team
DCP TEAM MEMBER
DCP Team