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Planning a rare disease registry

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
If you have any questions while reading this whitepaper or would like additional information on orphan reach’s expertise, feel free to request a consultation.

Do you plan to develop a rare disease registry? YesNo

Do you have an upcoming clinical trial as well? YesNo

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