In January and February some members of the board of NA Advocacy USA, Inc. (Susan Wagner, Julie Kerner and Bob Metzger) participated in an on-boarding class to learn about launching a disease Data Collection Program with RARE-X. RARE-X (https://rare-x.org/about/), a program of Global Genes (https://globalgenes.org/), is a non-profit created to accelerate rare disease research and treatment by removing barriers for data collection and sharing. It is a platform to collect, connect and share data.
We are just beginning the process so there will be more communication soon, but we are excited to provide a summary of this upcoming endeavor. Collecting data is an essential step on a rare disease research journey and an important way for patients and their caregivers to contribute to advancing care for their communities. RARE-X has developed a comprehensive platform to facilitate this data collection.
Here are just a few of the purposes and benefits of the RARE-X program:
- A structured and standardized system
- RARE-X manages the unique governance requirements of different countries
- Streamlines researcher access to data
- Informs researchers how our diseases change over time
- Has the ability to connect to existing data sources
- Enables better data to use in clinical trials
- Speeds up research and drug development
- Patient owned and managed
- No cost to patients or organizations
- No cost to researchers (scientists/pharma)
- Ongoing , long-term guidance and support
Soon we will have a Zoom meeting that will provide the necessary details for patients and their caregivers to get started on this exciting journey of sharing their information.