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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.

A collage of images including a members of the hypoparathyroidism community through their stages of the condition with text that says "Rare Together".

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.

Register with RARE-X

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.

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Meet the Data Collection Program (DCP) Team

Deb Murphy, Director of Research & Studies

Deb Murphy

Director of Research and Studies

"I believe that this will be truly groundbreaking for our rare disease. Being able to put all of our data together and then be able to sort out what works and what doesn't for each form, amazing! This data is owned by each and every one of us. Most data we supply for the industry, although de-identified, is not data that we can use, it is owned by the companies. This data is owned by us and will be used to our benefit, not industries! Can be broken up into segments and you do not have to do it all at once. I fix a cup of tea, and sit down and work on it. I invite you to join us!"

Headshot of Sherry Tickle

Sherry Tickle

Administrator, Natpara Support, DCP Team

"Patient and Caregiver info in one place will be tremendously helpful in furthering research into hypoPARAthyroidism. Instead of trying to collect data from many places, it will be in one database. After all, it’s we the “patient” who knows hypoPARA the best. A centralized database will give us a louder voice to help researchers and clinicians. A global database to enter the info a hypoPARA patient/caregiver knows, doesn’t get any better. Our info, our experience with hypoPARA, all in one place to be accessed for further studies into our rare disease."

Loretta Gulley, Secretary

Loretta Gulley

Secretary HPTH, DCP Team

"This type of global database can be a valuable asset to all who are looking to do research on us. There is only one way we can gain knowledge on a disease and that is through data. We need to take part in this!"

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