Life Sciences
Access patient-consented, research-grade natural history data, collected every day in the RareJourney app.
The challenge
Natural history studies are critical for rare disease research
Understanding disease progression, symptom patterns and patient experience is essential for developing effective treatments. Yet collecting this data has been expensive, slow and burdensome for patients.
Most rare disease data is locked in medical records or gathered through costly clinic visits, missing the real-time insight that comes from daily life.
How it works
RareJourney makes natural history data collection seamless, ethical and comprehensive.
- 01
Patient consent
Patients opt in to natural history studies, with full transparency about how their data will be used for research.
- 02
Mobile data collection
The app captures timeline events, symptoms, community insights and medical documents as patients manage their health day to day.
- 03
Research-ready format
Data is structured into research-grade natural history formats, ready for analysis without extra processing.
Your advantage
RareJourney delivers insights that traditional data collection misses.
- 01
Prospective and retrospective data
Real-time patient experiences captured as they happen, alongside retrospective medical records, for a complete picture of disease progression and outcomes.
- 02
Mobile-first engagement
Patients use RareJourney daily, not just at clinic visits, so the data covers the full experience between appointments.
- 03
Community insights
Patient-generated knowledge reveals patterns, treatment strategies and lived experience that clinical records alone cannot provide.
Who we work with
Research partners across the rare disease ecosystem.
- 01
Pharmaceutical companies
Natural history data for clinical trial design, patient recruitment and real-world evidence.
- 02
Research institutions
Longitudinal patient data for academic studies, disease characterisation and biomarker discovery.
- 03
Patient advocacy groups
Help your community contribute to research while learning more about their experiences and needs.
- 04
Clinicians and hospitals
Take part in multi-site studies and use aggregated patient insights to improve care.
Built on trust and quality
Every data point is collected with explicit patient consent, and the platform is designed with privacy-first principles to protect sensitive health information.
- Patient consent
- Explicit opt-in for research participation.
- Privacy first
- Designed from the start to protect sensitive health information.
- Research grade
- Structured, validated data formats.
Let's discuss your research needs
Whether you're planning a natural history study, looking for patient insights or exploring new research, we'd love to hear from you.