A comprehensive guide to existing free resources and strategic recommendations for patient advocacy nonprofits
Key Finding: Multiple high-quality, free clinical trial matching services already exist and serve millions of patients annually. Rather than building a new platform, nonprofit resources would be more impactful focusing on education, outreach, and navigation support for underserved populations.
Bottom Line: The infrastructure exists—the gap is in awareness, education, and equitable access.
ClinicalTrials.gov
Cost: Completely free
Coverage: Most comprehensive database globally
Features:
Direct search by condition, location, status
RSS feed subscriptions for automated alerts
API access for developers
Limitations: Not patient-friendly interface, requires medical knowledge
ResearchMatch
Organization: National Institutes of Health (NIH)
Cost: Completely free
Network: 255 research institutions, 68 community organizations
Features:
Secure patient profiles
Researcher-initiated contact
Broad health condition coverage
Strength: Government-backed credibility and extensive institutional network
CenterWatch Patient Notification System
Cost: Free patient registration and alerts
Features:
Email notifications for new matching trials
Searchable database by condition and location
Unbiased trial information
Revenue Model: Pharmaceutical companies pay for trial listings
Track Record: Operating since 1994, established industry leader
Antidote Match
Cost: Free for patients
Features:
AI-powered matching technology
Integration with 250+ patient community websites
Reaches 15 million patients monthly
Simple questionnaire-based matching
Strength: Advanced technology with extensive partner network
TrialJectory (Cancer-Focused)
Cost: Free for patients
Features:
AI-powered decision support
Multilingual concierge support (English, Spanish, French)
Personalized trial curation
Direct communication facilitation with research teams
Focus: Primarily cancer trials with sophisticated matching algorithms
Michael J. Fox Foundation Trial Finder
Focus: Parkinson's disease
Track Record: 60,000+ volunteers recruited
Features: Secure messaging with investigators, anonymous profile matching
NMDP Clinical Trials Search and Support
Focus: Blood cancers and disorders
Cost: Completely free
Features: Financial assistance for trial participation, expert guidance
Patient Side: Free access to matching and support services
Revenue Source: Pharmaceutical companies pay for patient recruitment
Market Size: Clinical trial recruitment represents >30% of trial costs for pharmaceutical companies
Patient Need: 80% of clinical trials are delayed due to insufficient enrollment
The free-to-patient model is sustainable because:
Pharmaceutical companies have significant recruitment budgets
Failed trials cost companies millions in lost investment
Faster recruitment reduces overall development costs
Patient matching services provide measurable ROI for sponsors
80% of cancer patients don't realize clinical trials are an option
75% of Americans have never discussed clinical trials with their healthcare provider
Many patients learn about trials too late in their treatment journey
Multiple platforms create confusion for patients
No central guide explaining which service fits which need
Patients may miss trials by not using all available resources
Rare diseases like Cowden syndrome may lack dedicated matching services
Rural patients have limited awareness of trial options
Non-English speakers face language barriers
Lower-income patients lack support navigating complex systems
86% of Americans believe doctors should discuss trials, but most don't
Providers lack time and resources to research trial options
No systematic integration of trial matching into clinical workflows
Rather than building new technology, focus nonprofit resources on higher-impact activities:
1. Patient Education and Outreach
Immediate Actions:
Create comprehensive patient-friendly guides to existing free services
Develop condition-specific resource directories
Partner with patient advocacy groups for broader reach
Focus outreach on underserved communities
Target Populations:
Recently diagnosed patients and families
Rural and underserved communities
Non-English speaking populations
Patients with rare diseases
2. Healthcare Provider Education
Key Initiatives:
Develop provider toolkits showcasing free matching services
Create workflow integration guides for clinical practices
Offer training sessions on trial discussion with patients
Provide patient handout materials for providers
Implementation Strategy:
Partner with medical associations
Integrate into continuing education programs
Focus on primary care and specialty practices
3. Navigation Support Services
Human-Centered Approach:
Offer personalized guidance on using existing platforms
Provide phone/email support for complex cases
Help patients understand trial options and eligibility
Assist with application and enrollment processes
Volunteer Program Potential:
Train volunteers to help patients navigate existing services
Create peer support networks
Develop mentorship programs for trial participants
4. Specialized Focus Areas
Rare Disease Advocacy:
Ensure rare conditions like Cowden syndrome are well-represented on existing platforms
Create specialized resources for rare disease patients
Partner with existing services to improve rare disease coverage
Results Tracking and Notification:
Help patients track trial results from studies they've followed
Create digest services summarizing relevant research developments
Connect patients with research communities around their conditions
Research and Documentation: Create comprehensive mapping of all free services
Partnership Development: Establish relationships with existing platforms
Resource Creation: Develop initial patient and provider educational materials
Target Population Selection: Choose specific conditions or communities for initial focus
Service Launch: Begin navigation support services
Provider Outreach: Start healthcare provider education initiatives
Program Expansion: Broaden to additional conditions and populations
Impact Measurement: Track patient outcomes and service utilization
Service Refinement: Improve offerings based on user feedback
Funding Diversification: Develop sustainable funding model
Technology Integration: Consider limited technology investments for specific gaps
Network Expansion: Build broader coalition of partner organizations
Building New Platform Costs:
Software development: $200,000 - $500,000+
Ongoing maintenance: $50,000 - $100,000 annually
Data licensing and API costs: $20,000 - $50,000 annually
Regulatory and compliance: $25,000 - $50,000 annually
Total Year 1: $295,000 - $700,000+
Leveraging Existing Resources:
Educational material development: $15,000 - $30,000
Staff time for outreach and navigation: $75,000 - $150,000 annually
Partnership development: $10,000 - $20,000
Marketing and awareness: $20,000 - $40,000 annually
Total Year 1: $120,000 - $240,000
Impact Multiplier: Leveraging existing platforms could help 3-5x more patients with the same budget.
Number of patients successfully connected to trials
Increase in trial awareness among target populations
Provider adoption of trial discussion practices
Patient satisfaction with navigation services
Patient testimonials and success stories
Provider feedback on resource utility
Partner platform engagement levels
Community awareness improvements
Increased clinical trial participation in underserved populations
Improved patient access to innovative treatments
Enhanced provider-patient communication about research options
Stronger advocacy for patient-centered trial design
The clinical trial matching infrastructure already exists and serves millions of patients effectively. The real opportunity for nonprofit organizations lies not in building competing technology, but in ensuring equitable access to these existing resources through education, outreach, and navigation support.
By focusing on awareness, education, and human-centered support services, nonprofit organizations can achieve greater impact at lower cost while complementing rather than competing with established platforms. This approach leverages existing investments while addressing the critical gaps that prevent patients from accessing potentially life-saving research opportunities.
The goal should be connecting every patient who could benefit from clinical trials with the resources they need to find them—regardless of their condition, location, or socioeconomic status.
ClinicalTrials.gov: National Library of Medicine
ResearchMatch: Vanderbilt University Medical Center
CenterWatch: WCG CenterWatch
Antidote: Antidote Technologies
TrialJectory: TrialJectory Inc.
American Cancer Society Clinical Trial Matching Services Analysis
NIH Clinical Trials Participation Guidelines
Patient Advocate Foundation Healthcare Navigation Resources
Schedule meetings with existing platform representatives
Conduct needs assessment within target patient populations
Develop partnership agreements with complementary organizations
Create detailed implementation timeline and budget proposal
This analysis was prepared to guide strategic decision-making for nonprofit organizations considering clinical trial patient support initiatives. For questions or additional information, please contact the research team.