| Data Type | What | Why |
|---|---|---|
| Account | Email, name, password (hashed) | To create and secure your account |
| Diagnosis Profile | Tumor type, markers (IDH, MGMT, 1p/19q), treatments, disease status | To match you with relevant clinical trials and research |
| Health Tracking | Signal check-ins, medications, side effects, scans | To generate your Appointment PDF and track your health over time |
| Community | Posts, replies, reactions, poll votes | To participate in the community |
| Research | Protocol votes, survey responses, research question votes | To contribute to research governance |
| Trial Interests | Which trials you've bookmarked, your interest level, notes | To build your research interests section in the Appointment PDF |
You can see, download, and delete all your data at any time from your dashboard settings.
A caregiver can only link to you if you explicitly accept their request. They can submit their own observations but cannot see your private health data or modify your records. Their data appears separately in the Appointment PDF, clearly attributed.
The Appointment PDF is generated by you and shared by you. We never send it to anyone automatically. You print it or save it as PDF and bring it to your appointment. Your doctor only sees what you choose to share.
We can see aggregated platform statistics (total users, posts, check-ins) but do not routinely access individual health records. We may access specific data only for technical support at your request or for content moderation (reported posts).
Pharma companies never see your individual data. They receive aggregated, anonymous community-level insights only — such as "43% of GBM patients on TMZ reported nausea severity 6/10 or higher." Every data package delivered to a pharma partner is published on the platform so you can see exactly what they received.
The Research Wallet is funded by four sources: pharma surveys, protocol reviews, industry-sponsored patient education, and pharma AMAs. 100% of every fee goes to the wallet — Zyntha keeps nothing. Every quarter, community members vote on how funds are allocated across four buckets: Clinical Research, Caregiver Support, Library & Translation, and Emergency Reserve. The balance, all transactions, and all votes are visible to every member.
When you post anonymously, your identity is stored internally for safety moderation only (in case of content that violates community guidelines). Your name, email, and identity type are never exposed in any API response, page, notification, or data export. No one — not other users, not moderators, not pharma companies — can see who wrote an anonymous post.
Go to My Health → scroll to the bottom → click "Download My Data." You'll receive a JSON file with all your health records, community posts, trial interests, and account information.
Go to My Health → scroll to the bottom → click "Delete My Account." This permanently removes all your data from our systems. Community posts you've made will be anonymized (author removed) but the content may remain to preserve conversation threads. This action cannot be undone.
You can update your diagnosis profile, medications, and all health data at any time from your dashboard.
Questions about your data or privacy? Email privacy@zyntha.org
Want to report a security issue? Email security@zyntha.org