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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 white paper or would like additional information on orphan reach’s expertise, feel free to request a consultation.

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