Privacy Policy

Who we are

Fenix is an independent research discovery platform based in the United Kingdom. For the purposes of UK GDPR, the data controller is Jacob Walker, Fenix Health. You can contact us at hello@fenixhealth.app.

What information we collect

• Questionnaire answers. The multiple-choice and free-text answers you give when searching for research opportunities (for example: genetic testing status, symptoms, age, country, town and travel preference). We only ask for these if you separately agree to it, and you can search and browse every study without answering them. Your answers are stored locally in your browser on your own device. Each time you run a search, they are sent to Fenix's own matching system, held in memory for a few seconds to work out which studies may be relevant, and then discarded. They are not saved in the Fenix database, not written to our logs, and not sent to our email provider or the AI service.
• Personalisation details for Research Updates. If you tick the optional personalisation box when signing up for Research Updates, we save alongside your email address the country and town you selected and whether you are open to studies abroad. We do not save your answers about genetic testing or symptoms, and we do not save your precise coordinates. If you leave that box unticked, we save only your email address and how often you want to hear from us.
• Research alert email. If you opt in, your email address (and optionally a first name) so we can email you when relevant Huntington's disease research opportunities become available.
• Feedback and bug reports. Any comments, ratings and optional email address you choose to send us. The comment boxes are free text, so anything you type there — including health information, if you choose to mention it — is sent to us and stored with your feedback. Please only include what you are comfortable sharing.
• Analytics events. If you accept analytics cookies, product-usage events (for example "questionnaire started") sent to PostHog, together with device and browser information and an approximate location derived from your IP address. These events are pseudonymous rather than anonymous: PostHog assigns a persistent identifier to your browser. Some non-sensitive questionnaire-derived values — the country you selected and your travel preference — may be included. We do not send names, email addresses, free-text answers, or your health, genetic, symptom, age, relationship/carer or precise-location questionnaire information to PostHog.
• Technical logs. Standard server logs (IP address, browser type, request time) used to keep the service running and secure.

You do not need to create an account to use Fenix. We do not ask for medical records, diagnoses or clinical documentation.

Why we collect it and our legal basis

• To match research opportunities from public registries to your answers — your separate, explicit consent, given by ticking the unticked consent box before the questionnaire. We record which version of that wording you agreed to and when, on your device. You can withdraw it at any time by clearing your questionnaire answers (see below), and you can use Fenix without giving it.
• To send research alerts — your explicit consent, given via the opt-in checkbox.
• To personalise Research Updates — your separate, explicit consent, given via the optional personalisation checkbox. We record which version of that wording you agreed to and when. You can withdraw it at any time by unticking "Only send studies that are relevant to my questionnaire responses" on your Research Updates preferences page (linked from every email), by unsubscribing, or by contacting us.
• To respond to feedback and bug reports — legitimate interests in improving the service.
• To measure and improve Fenix — your consent for analytics cookies.

How we store it

The information we actually retain — Research Updates subscriptions, feedback and bug reports — is stored in our managed database (hosted in the EU) with row-level security enabled so records cannot be read publicly. Access is limited to the small Fenix team on a need-to-know basis. Your questionnaire answers are not stored in that database.

Research Updates

Research Updates are email updates about new Huntington's disease studies. By default they are general: everyone receives the same update, and we store only your email address, optional first name and how often you want to hear from us.

Personalisation is optional. If you tick the personalisation box, we save a small matching profile alongside your email address: your country, your town and whether you are open to studies outside your country (your travel scope). Your raw questionnaire answers are never stored as part of that profile.

Personalisation is only used where we hold a current, active agreement from you. Where a saved matching profile exists but that agreement is not currently in place, the profile is not used and those subscribers receive general updates only.

You can turn personalisation off at any time on your Research Updates preferences page, which also deletes the saved matching profile. If you unsubscribe, we remove the matching profile and keep only a minimal suppression record (your email address and the fact you unsubscribed) so that we do not email you again by mistake. Ask us and we will delete that too.

How long we keep it

• Questionnaire answers: kept in your browser until you clear them. They are sent to our matching system each time you run a search, processed in memory and discarded once your results are produced — they are not stored in our database.
• Research Updates subscriptions: kept until you unsubscribe or ask us to delete them, as described in the section above.
• Feedback and bug reports: after 24 months we remove the email address and everything you typed in the free-text boxes. The row itself is kept, but only with the anonymised rating and multiple-choice values, which we use for aggregate statistics about how Fenix is doing.
• Anti-spam log: a short technical record created when a feedback or bug report form is submitted, used to detect abuse. It is deleted after 7 days.
• Email delivery records: records of which Research Updates emails were sent to you, and whether delivery succeeded, are kept so we do not send duplicates and can investigate delivery problems. We have not yet set a fixed retention period for these; you can ask us to delete them.
• Analytics events: retained by PostHog under the retention policy that applies to our PostHog project. We have not independently confirmed a specific period here; contact us if you would like the current setting.

Who has access

Only the Fenix team, and the following processors acting on our instructions:

• Our managed database and hosting provider (EU region).
• PostHog (EU region), for analytics — only if you consent.
• Resend, our email delivery provider, which processes your email address, name (if given) and the content of the emails we send you.
• A large-language-model provider used to generate the plain-English study summaries. It only ever receives information about the study itself. Your questionnaire answers are not sent to it.
• Google Maps, which powers the address suggestions when you type a place name. Only the text you type in that box is sent. No health or genetic information is included.

We never sell your information and we do not share it with third parties for marketing.

Analytics (PostHog)

PostHog is only loaded if you accept analytics cookies. When enabled, it records product-usage events, your device and browser details and an approximate location derived from your IP address, and it assigns your browser a persistent identifier — so this data is pseudonymous rather than anonymous. Events may include the country you selected and your travel preference. It never receives your name, email, free-text answers, or your health, genetic, symptom, age, relationship/carer or precise-location questionnaire information. You can change your choice at any time:

Your questionnaire answers on this device

Your questionnaire answers, the study results saved from your last search, and your agreement to Fenix using those answers are all kept in this browser. They are sent to our matching system each time you run a search and discarded once your results are produced. You can remove them at any time, which also withdraws that agreement — you'll simply be asked again if you use the questionnaire in future.

This only affects this browser on this device. It does not change a Research Updates subscription: to turn off personalisation or stop the emails, use your preferences page or the unsubscribe link in any email, or contact us.

Your UK GDPR rights

You have the right to:

• Access the personal information we hold about you.
• Ask us to correct information that is wrong.
• Ask us to delete your information ("right to be forgotten").
• Ask us to restrict or stop processing.
• Withdraw consent for analytics or emails at any time.
• Complain to the UK Information Commissioner's Office (ICO) at ico.org.uk.

Deleting your information

To request deletion of any information you have submitted (research alert subscription, feedback, bug report), email hello@fenixhealth.app from the address you used, with the subject line "Data deletion request". We will action verified requests within 30 days.

Contact

For any privacy question or to exercise your rights, email hello@fenixhealth.app or visit our contact page.