Recruitment Strategies

The rare disease recruitment challenge

For common diseases, standard recruitment channels (physician referral, hospital outreach, advertising) work reasonably well. For rare diseases, where the participant population may number in the hundreds or thousands globally, recruitment requires a fundamentally different approach.

Key principles for rare disease recruitment:

1. Participants are your best recruiters, the community recruits itself
2. Meet participants where they already are (online communities, support groups, specialty clinics)
3. Trust is everything, participants evaluate the organization behind the registry before enrolling
4. Reduce friction relentlessly, every extra step loses participants

Recruitment channels

Community and support organizations

Your own organization's community is your primary recruitment source. Leverage:

• 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

Clinical site partnerships

Specialty clinics (neuromuscular centers, metabolic disease clinics, etc.) see concentrated participant populations. Work with these sites to:

• 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

Registries and disease networks

Many disease communities have existing participant directories, foundations, or networks. Coordinate recruitment with:

• Other disease foundations in your space
• International advocacy organizations
• Academic centers with existing participant cohorts

Social media and online communities

• 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)

ClinicalTrials.gov listing

List your registry on ClinicalTrials.gov (it's free). Participants and family members actively search this database. A registry listing increases findability and establishes scientific credibility.

clinicaltrials.gov

NORD RareConnect and Global Genes

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

Reducing enrollment friction

Every step between a participant hearing about your registry and completing enrollment is an opportunity for dropout. Analyze your funnel:

Awareness → Interest → Eligibility check → Consent → Registration → Baseline questionnaire → Complete

Measure dropout at each stage. Common friction points:

• 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
• Offer enrollment assistance (phone support, email help desk)

Retention strategies

Enrollment is only the beginning. Long term registry value depends on participant retention for follow up data.

• 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

Tracking recruitment metrics

Key resources

• NORD Rare Disease Participant Recruitment Resources
• Global Genes Rare Advocacy Tools
• RareConnect
• Inspire Participant Community
• ClinicalTrials.gov Registration Guide
• PCORI Engagement in Research Resources

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