Step 5.
Recruit & Engage Participants

5.1 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:
  • Genetic and Rare Diseases Information Center – National Center for Advancing Translational Sciences (NCATS)
  • Orphanet – French National Institute of Health and Medical Research (INSERM)

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

Use multiple approaches to reach as many participants as possible.

5.2 Create Recruitment Materials

Develop material to help you effectively reach participants. All materials should explain what the registry is and why participants would want to join it. Also explain that participants’ information will be confidential and their data will be protected. Refer to the RaDaR Tool: Sample Recruitment & Outreach Material, as you develop these materials.

Examples of information to include in recrutiment materials:

• Registry goals/purpose
• How to join the registry
• How data will be used and who will have access
• Participation is voluntary/withdrawal options
• Contact person
• General information about registries such as frequently asked questions (FAQs)

Examples of recruitment materials are:

• E-mail content
• Blog post content
• Chat group posts
• Pictures or graphics to post on social media platforms
• One-page printable handout (to distribute at conferences or display on bulletin boards in strategic locations)
• List of common questions and answers

5.3 Develop an Engagement Plan

Documenting how you plan to engage with your participants will help you meet the goals you have set for the registry. It is important to create and maintain open communication channels so that participants stay engaged with the registry.

Key things to address in your communication strategy:

• Who, how, and when: Who will communicate with participants? How and when will you communicate?
• Transparency: How will you convey new information about the disease to participants, media, and other groups?
• Internal and external communication: Distinguish between internal registry communication needs and communication with participants.
• Communication methods and materials: What platforms will you use to engage with participants (chat group, website, etc.)?

Information you may want to share with participants:

• New findings or information on the disease.
• Changes or updates to the registry.
• Upcoming research needs.
• Data and results from studies.

Participants may contact you with:

• Updates to their contact information or health status.
• Question about how their information will be used.
• Questions on research studies.

5.4 Create Communication Materials

After developing a plan for engaging with participants, draft communication materials to maintain their interest in staying active in the registry. 

Examples of communication materials:

• Welcome letter
• Communications about new study opportunities
• Regular newsletters/emails with registry updates
• Semi-annual requests for participants to update their information

Resources