You don’t need to know what HIPAA stands for to trust an app with your child’s seizure data. Here are the questions caregivers actually ask us, in plain English. The long legal version is in the sections below if you want the details.
- Is my child’s information safe here?
- Yes. Everything you log is stored encrypted in a cloud database that only you can access with your login. The servers are in the U.S. and use the same kind of security a hospital system would use — even though we’re a personal tracking app, not a hospital.
- Can anyone see my child’s name?
- No one outside of you. Seizure logs, medications, labs — none of them are stored with your name or your child’s name. Inside our database, everything is tied to a random account number, not a person. The only places a name could appear are (a) your login profile, which only you see, and (b) the biography page, where you can write your own notes. That biography text stays in our database and is never sent to anyone or anything, including the AI — unless you turn on the optional Public Profile feature in Settings, which publishes your biography to the open internet. See the next question.
- What if I turn on the public profile feature?
- If you enable a public profile under Settings, a page is published at a URL you choose that anyone with the link can read. Your biography text goes on that page along with any articles you’ve marked as public. Do not put anything in the biography field — names, addresses, phone numbers, photos of your kid, school details, anything — that you don’t want on a public website. Search engines can cache a public page even if you turn public mode off later. If you just want a private journal, leave public profile OFF.
- My child is in a clinical trial. Will trial data leak anywhere?
- No. While a clinical trial is active, absolutely none of your data from the trial period flows to any research registry, aggregate export, or data-sharing system. We recognize well-known Dravet trial drugs automatically (Zorevunersen, Soticlestat, Clemizole, etc.) and block their data immediately. After the trial ends, we ask you one simple question: would you like to contribute your trial-period data to the N1 Precision research registry to help improve future trial designs? It’s entirely your choice, and saying no keeps trial data out forever. You never have to worry about accidentally sharing something a trial sponsor said to keep confidential.
- Can my doctor see this data?
- Only if you deliberately share it with them. We don’t push your data anywhere. You can print reports to bring to an appointment, and you can send a secure confirmation link if you want your neurologist to verify a diagnosis in the app — but nothing leaves your account unless you make it happen.
- What does the AI see when I ask it a question?
- The AI sees things like “age 12, female, Dravet syndrome, 24 kg, took these medications, had these seizures on these days.” It does not see any names, your email, your address, the exact date of birth, or anything you typed into the biography field. Those are blocked in two different places in our code so they can’t accidentally slip through. The chat feature uses Anthropic’s Claude today; a future pattern-detection feature will also send the same de-identified summary to Google Gemini and Amazon Nova to get three independent opinions — you’ll get an opt-in before that ships.
- Do you sell my data?
- No. Ever. We don’t run ads, we don’t sell lists, and we don’t share your data with marketers or data brokers. Not now, not later.
- If I delete my account, is it really gone?
- Yes. Anything identifying (your login, email, profile, biography notes) is permanently deleted right away. If you want the underlying health records fully erased too, just ask us — contact info is at the bottom of this page.
- Wait — is this HIPAA compliant?
- The honest answer: HIPAA technically doesn’t apply to you tracking your own child’s data in a personal app. HIPAA is a rulebook for hospitals, insurance companies, and clinicians. When you type your own information into a journaling app, those rules don’t kick in. We still follow the same safeguards HIPAA would require — encryption, access controls, audit logs — because we think your data deserves that level of protection even when the law doesn’t require it.
- What about genetic info — SCN1A, mutations?
- We do not store genetic data of any kind. No variants, no mutation reports, no sequencing results. That kind of information belongs in a proper genetic registry under its own rules, not in a seizure-tracking app. Please don’t enter it anywhere in the app, even in the biography field.
- I still have questions. Who do I ask?
- Jump to the Contact section below and email us directly. We answer personally — no ticket system, no bot.
