Module 13 · Part 4 · Participants

Recruitment Strategies

Build a recruitment strategy that reaches your community effectively, with particular attention to the unique challenges of rare disease recruitment.

Patient Registries 101 · Dr. Danielle Boyce · EpilepsyLive

The rare disease recruitment challenge

For common diseases, standard recruitment channels (physician referral, hospital outreach, advertising) work reasonably well.
Key principles for rare disease recruitment
Participants are your best recruiters, the community recruits itself
Meet participants where they already are (online communities, support groups, specialty clinics)
Trust is everything, participants evaluate the organization behind the registry before enrolling
Reduce friction relentlessly, every extra step loses participants

Your own organization's community is your primary recruitment source.
Email newsletter to members
Social media (Facebook groups are particularly active for rare disease communities)
Annual conference / family day
Participant ambassadors who share their registry participation story

Specialty clinics (neuromuscular centers, metabolic disease clinics, etc.) see concentrated participant populations.
Train physicians and nurses to mention the registry at clinic visits
Provide participant-facing materials for waiting rooms and exam rooms
Enable direct referral from the clinic to the registry

Many disease communities have existing participant directories, foundations, or networks.
Other disease foundations in your space
International advocacy organizations
Academic centers with existing participant cohorts

Facebook participant groups for your disease
Rare disease social networks (Inspire, RareConnect)
Disease specific forums and Reddit communities
Targeted social media advertising (Facebook/Instagram allow targeting by condition interest)

Both organizations have participant-facing platforms and can help publicize your registry to their communities.

Every step between a participant hearing about your registry and completing enrollment is an opportunity for dropout.
Measure dropout at each stage.
Lengthy eligibility screening before consent
Consent document that requires printing and signing
No mobile-optimized enrollment form
Required fields that participants don't know (exact diagnosis date, genetic mutation details)

No "save and return later" option
Best practices
Enable enrollment from a mobile device
Use eConsent with digital signature
Make baseline questionnaire completable in 20 minutes or less
Send follow up reminders at 24 hours, 1 week, and 1 month for incomplete enrollments

Enrollment is only the beginning.
Regular communication: Quarterly or annual newsletters reporting registry progress and findings
Results return: Share aggregate findings back to participants, what is the registry learning?
Feedback loops: Surveys about registry experience; act on feedback
Acknowledgment: Recognize participants in publications (with consent)
Reminders: Automated follow up reminders at scheduled data collection timepoints

Easy withdrawal: Make it simple to update preferences or withdraw, trust is maintained by respecting autonomy