Planning a rare disease registry
Our new white paper, Planning a Rare Disease Registry, will aid sponsors in evaluating how a registry can impact the success of bringing new orphan treatments to market as well as how to initiate and plan for a rare disease registry.
What’s Inside:
- Defining the rare disease registry
- Initiating and planning using collaboration across stakeholders
- Protocol structure and planning insights
- Ethical requirements and standards of practices
- Cost management strategies
- Details about scheduling, communication, and both quality and risk management
- Protocol structure
- Global guidelines and regulations
- Outlining the registry scope and objective
- Funding the registry