Recruit & Engage Participants
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.
Develop a Recruitment Strategy
Section III: Operating Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)
World Federation of Hemophilia Guide to Developing a National Patient Registry World Federation of Hemophilia (WFH) (link)
Section II: Legal and Ethical Considerations for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)
Create Recruitment Materials
Frequently Asked Questions - Registries NIH Clinical Research Trials and You (link)