CHOPS Syndrome Global is partnering with RARE-X [a 501(c)(3) nonprofit] to build a Data Collection Program, also known as data registries. When you participate in the CHOPS Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies. The Data Collection Program will help …
- Inform researchers how CHOPS 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
Our goal is to make the process as easy as possible for you. By clicking on the button 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.
Check out the RARE-X and CHOPS Webinar below for directions on how to access the Data Collection Program database and complete the surveys!
To learn more about data collection programs check out the videos below!
- Why Participate in Data Collection
- Data Standards and RARE-X
- RARE-X - Federated Data for Patients and Researchers
- What is Data Governance?
For more information on RARE-X, visit their website below:
