Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform...

Area of Science:

• Digital Health
• Patient Engagement
• Rare Disease Research

Background:

• Rare disease communities are globally dispersed and fragmented, limiting research on most conditions.
• A lack of cohesive research communities hinders knowledge generation for rare diseases.
• Patients affected by rare diseases often lack condition-specific research due to these community gaps.

Purpose of the Study:

• To develop a secure, global community platform for rare disease patients, transcending geographical and language barriers.
• To facilitate and promote rare disease research through patient involvement.
• To create a centralized hub for patient data collection and analysis.

Main Methods:

• Co-creation design methodology was employed, involving workshops with diverse stakeholders including patients, caregivers, clinicians, and researchers.
• Iterative development based on stakeholder input to build a multi-functional platform.
• Utilizing collective intelligence principles within a digital environment.

Main Results:

• The platform, Share4Rare, was developed with layered functionalities: public information/education, a secure patient/caregiver community, and a dedicated research section.
• The research section focuses on collecting patient information for analysis, representing the platform's core value.
• Stakeholder workshops were crucial in defining the platform's structure and features.

Conclusions:

• Global collaboration and active patient/caregiver participation are vital for advancing rare disease research.
• Digital platforms implementing collective intelligence can overcome geographic and language limitations, engaging patients in research.
• Share4Rare facilitates clinical information donation, empowering patients in research and increasing scientific knowledge on rare conditions.
• Patient-centric design, achieved through co-design methods, is essential for effective rare disease research platforms.