Review & Evolve Your Registry

Plan for Next Steps

Look ahead and determine what’s next for your registry. You’ve fostered productive communication and received input from key stakeholders. Use the information gathered from patients, researchers, and industry to inform your next steps.

Next steps could include:

  • Forming a Scientific Advisory Board for your registry with key researchers
  • Establishing a data governance program
  • Securing funding sources to further grow the registry
  • Building your network to include other groups or organizations
  • Creating a non-profit disease advocacy organization

The scope of your registry can grow to:

  • Cover different geographical regions (e.g., national to international)
  • Address new research questions
  • Include other types of patient data (e.g., medical history, biobanks)
  • Transition to a more advanced registry platform

Use the RaDaR Tool: Registry Evaluation Checklist to determine whether the registry is ready to move to the next phase. The resources included in the Resources section of this step are also helpful.

The next phase of RaDaR will include step-by-step information on collecting participant medical history. Read more about future plans for the RaDaR website.