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Recruit & Engage Participants

Develop a Recruitment Strategy

When your registry ready to go, locate participants and encourage them to join. Determine how to find participants that meet your registry criteria and develop a strategy to recruit them.

Your recruitment strategy could include the following components:

Description: What is your registry?

  • What are your registry’s goals and purpose?
  • Why should participants join (what value does it provide to them?)
  • How will the participants’ information be collected and stored?
  • Who will have access to the participants’ information?
  • How will you monitor and evaluate the success of your registry?

Timeline: When will key activities occur? 

  • When will recruitment outreach materials be ready?
  • When will you launch recruitment efforts?
  • When will your registry be ready for recruiting?
  • When will participants be contacted by researchers?
  • How will your activities change over time (e.g., will initial recruitment differ from ongoing recruitment)?

Methods for Finding Participants: How will you locate participants?

  • Where do participants get information and medical care?
  • On what platforms are participants communicating with each other?
  • How/where are new participants diagnosed?
  • Are there key influencers who can help you reach more participants?
  • Are there other ways to extend your reach?

Strategy for Recruiting Participants: What channels will you use to encourage participants to join your registry?

  • Create social media accounts for your registry.
  • Post information about your registry in strategic online locations:
    • Websites, social media platforms, blogs, and chat groups
    • Nonprofit organizations’ websites
    • Other existing patient advocacy groups’ websites
  • Connect directly with specialists or clinical centers that are diagnosing and treating patients.
  • Request to be included in registry databases:

Visit the Resources section of this step to learn about additional relevant resources.

Use multiple approaches to reach as many participants as possible.