How we make data commercialization credible, ethical, and always in your control.
Our core principle
Your health data belongs to you. Research data contribution is always voluntary, always separate from app usage, and never includes individual health records. Only aggregated, de-identified datasets are shared — and only with your explicit opt-in consent.
Contributing data to research is completely optional and separate from using RareJourney:
Explicit consent required
You must actively opt in to research data sharing. There is no pre-checked box or hidden consent.
Full app functionality without opt-in
You can use 100% of RareJourney's features without contributing to research. Your experience is not diminished in any way.
Choose what to contribute
Granular controls let you select which types of data (e.g., symptom patterns, treatment timelines) you're comfortable contributing.
Withdraw anytime
You can opt out at any time from your account settings. Your decision won't affect your app access.
Individual health records are never shared with research partners. Only aggregated, de-identified datasets that meet strict privacy thresholds.
No names, email addresses, or contact information
No uploaded documents or medical records
No personally identifiable details (dates of birth, specific locations, rare identifiers)
No chat logs or free-text journal entries that could identify you
Implementation in progress
We are currently finalizing our de-identification methodology and aggregation thresholds. Until this process is complete and independently reviewed, no data will be shared for research purposes, even with opt-in consent.
When complete, our de-identification process will follow the Safe Harbor framework with additional controls for small populations:
Safe Harbor compliance
All 18 HIPAA Safe Harbor identifiers removed, including:
Aggregation thresholds
Minimum group sizes enforced to prevent re-identification. For rare diseases with small populations, higher thresholds and additional noise injection will be applied.
Data minimization
Only fields relevant to specific research questions are included. Unnecessary details are stripped even from aggregated datasets.
Expert review
Before any data is shared, de-identification will be reviewed by a qualified expert to assess re-identification risk.
When we share aggregated, de-identified datasets, all research partners must meet strict requirements:
Data Use Agreements (DUAs)
Binding contracts prohibit attempts to re-identify individuals, share data further, or use data outside approved research purposes.
Ethical review
Research proposals reviewed for scientific merit, ethical soundness, and community benefit. Projects that could harm rare disease communities will not be approved.
Transparency commitment
Partners must commit to publishing results and sharing findings back with the RareJourney community.
Security requirements
Partners must demonstrate adequate data security practices (encryption, access controls, incident response).
You can opt out of research data contribution at any time:
As our research program matures, we plan to establish:
No data is currently being shared for research purposes. The opt-in framework exists in the app, but the de-identification methodology is still being finalized and independently reviewed.
We're committed to getting this right before we share anything. When we're ready, we'll: