Illustrative scenario · Pharma & biotech
Continuous natural-history data across partner sites
A biotech preparing a pivotal program needed natural-history data on a rare condition with patients spread across several countries.
Challenge
The scenario's data and workflow challenges
- Patients traveled long distances for six-monthly site visits.
- Function and symptom change between visits went unrecorded.
- Each site recorded data in its own format.
Data sources
Data sources in the illustrative workflow
- Caregiver-reported outcomes
- Wearable activity
- Site visit records
- Genetic and lab results
Approach
The proposed collection and integration approach
Partner sites
Sites in several regions onboarded patients without changing their own processes.
Home measures
Caregivers recorded function and symptom diaries in the app.
Harmonization
Data was standardized into one longitudinal record per patient.
Workflow
- Site onboarding
- Patient consent
- Home diaries
- Harmonized record
- Natural-history dataset
Outputs
Illustrative outputs for each team
- Clinical development
- Between-visit trajectories to inform endpoint selection
- Data science
- Harmonized exports
- Families
- Fewer reasons to travel
Outcomes
Results, once confirmed
We only publish measured outcomes that have been confirmed and approved.
- Outcomes are reviewed with the program and published only after confirmation.
- Dataset documented for review
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