Join the Fight Against Rare Diseases

Participating in rare disease research is one of the most powerful ways patients and families can contribute to medical breakthroughs. Our Rare Disease Research Registry Signup form makes it simple for research institutions, hospitals, and patient advocacy organizations to enroll participants in longitudinal studies while maintaining the highest standards of informed consent and data privacy.

Designed for Complex Research Requirements

This template handles the unique challenges of rare disease research enrollment:

• Comprehensive participant screening with detailed medical history and diagnosis verification
• Multi-layered consent processes for genetic testing, biospecimen collection, and data sharing
• Clear explanations of data usage and participant rights throughout the study
• Long-term follow-up commitment tracking to ensure participants understand study duration and requirements

Streamline Enrollment with Paperform

Built on Paperform's flexible platform, this form adapts to your specific research protocol. Use conditional logic to show relevant questions based on diagnosis type, adjust consent language to match your IRB requirements, and collect digital signatures through Papersign to create legally binding consent documents—all without managing separate tools or paper trails.

Connect submissions to your research database, CRM, or study management system using Stepper to automatically notify your research coordinators, create participant records, and trigger follow-up communications. This keeps your enrollment pipeline moving efficiently while maintaining complete audit trails for regulatory compliance.

HIPAA Considerations

While Paperform offers SOC 2 Type II compliance and robust security features, it is not a HIPAA-compliant solution. If your research requires HIPAA compliance for protected health information (PHI), please consult with your institutional review board (IRB) and IT security team to ensure appropriate safeguards are in place, or use this form for non-PHI screening only.

Accelerate Medical Discovery

For research institutions, patient advocacy groups, and healthcare organizations working to understand and treat rare diseases, this registry form provides the professional, compliant infrastructure you need to build meaningful participant cohorts. Every successful enrollment brings us one step closer to breakthrough treatments.

Start collecting registry signups today with Paperform's secure, professional platform trusted by healthcare and research organizations worldwide.