RareLaunch – Research Ready

Categories: RareLaunch®
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About Course

If you are working with a nonprofit organization and considering becoming more involved in research, NORD’s Research Ready program is designed to provide training and guidance to help you get started and consider your options. Because rare diseases often do not have any research or drug development activity underway, it is critical that patient communities are empowered and educated about becoming research ready so that they can effectively support research and development when it begins.

What Will You Learn?

  • Understand the basics of natural history studies and why they are important to rare disease drug development and discoveries
  • Learn how to collaborate with researchers and industry to reach your research goals
  • Become familiar with the International Review Board (IRB) process
  • Leverage social media to recruit patients to participate in your research

Course Content

Research Ready

  • The Impact of Research When Your Organization Drives It
    24:52
  • My Rare Journey
    28:44
  • My Rare Journey – Feedback
  • Is Your Organization Research Ready?
    45:00
  • Is Your Organization Research Ready – Feedback
  • NORD IAMRARE Registry Case Studies
    38:14
  • NORD IAMRARE Registry Case Studies – Feedback
  • Research Standards & Best Practices
    38:14
  • Research Standards & Best Practices – Feedback
  • Research Standards & Best Practices – Summary Video
    05:10
  • From Diagnosis to Driving Research
    40:21
  • From Diagnosis to Driving Research – Feedback
  • Nothing about Us, without Us: The Community’s Role in Recruitment and Engagement for Research and Registries
    36:22
  • Nothing About Us, Without Us: The Community’s Role in Recruitment and Engagement for Research and Registries – Feedback
  • How to Connect with Scientists and Industry Stakeholders
    36:00
  • How to Connect with Scientists and Industry Stakeholders – Feedback
  • Using Registry Data to Empower your Organization and Engage with Researchers
    39:49
  • Using Registry Data to Empower your Organization and Engage with Researchers – Feedback
  • Using Registry Data to Empower Your Organization – Summary Video
    05:38
  • Leveraging Social Media to Connect with the Rare Community
    37:11
  • Leveraging Social Media to Connect with the Rare Community – Feedback
  • How to Plan Your Research Through Multi-Stakeholder Engagement and Strategic Planning
    42:13
  • How to Plan Your Research Through Multi-Stakeholder Engagement and Strategic Planning – Feedback
  • The Impact of Research When Your Organization Drives It – Feedback

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