HHT Compass is the patient diary app for the Diamond Trial, a clinical study run by Diagonal Therapeutics, Inc. (“DiagonalTx”, “we”). The app is available only to enrolled study participants and study staff.
You can ask us to delete your HHT Compass account at any time, for any reason, and you do not have to give one. Please read the section on retained study data below before you send your request — because HHT Compass is a clinical trial app, closing your account does not erase the study records you have already contributed.
How to request account deletion
Send us an email and we will process your request. This is the only channel we use, so that we can confirm your identity before closing an account.
If the button does not open your mail app, write to privacy@HHTCompass.com with the subject “HHT Compass – account deletion request”.
What to include
- The email address you registered with in the app
- Your Patient ID (for example XXX‑001)
- Your Study ID
Please do not include health information, diary entries or details of your condition in the email. We only need enough to identify the account.
Not sure of your Patient ID or Study ID? They were given to you by your study team when you enrolled and appear on your study documents. Your study site can also confirm them — their contact details are in the app under Menu → Support, and on your informed consent form.
What happens after you send the request
- We acknowledge it within 5 working days.
- We verify the request with your study site, so that nobody else can close your account.
- We close the account. Your sign-in is permanently disabled and the app stops working for you on every device.
- We confirm in writing what was deleted and what was retained.
We complete requests within 30 days of verifying your identity. If we need longer — for example because your study site is closed for a holiday period — we will tell you why and give you a new date.
Deleted when we close your account
- Your sign-in credentials: email address, password, app PIN and any biometric unlock setting
- Your session and device tokens, so you are signed out everywhere
- Your push notification registration and reminder schedule — the daily reminders stop
- Contact details held solely for running the app account, rather than as part of the study record
After this, you cannot sign in to HHT Compass again, and you cannot record new diary entries or complete surveys in the app.
Study data we cannot delete, and why
The diary entries and survey answers you have already submitted are part of the clinical trial record and cannot be erased. We are legally required to keep them, in pseudonymised form, for at least 25 years after the trial ends. This applies even after your account is closed, and even if you withdraw from the study.
This is not a policy we choose. Clinical trial records are evidence about whether a medicine is safe and whether it works. Regulators, ethics committees and independent auditors must be able to re‑examine them long after a trial has finished — including data from participants who later left the study. Deleting one participant’s records would make the remaining trial data unreliable and unverifiable.
You were told about this when you enrolled, and it is set out in the informed consent form you signed.
The rules that require it
- EU Clinical Trials Regulation (EU) No 536/2014, Article 58 — the sponsor and the investigator must archive the contents of the clinical trial master file for at least 25 years after the end of the clinical trial.
- US 21 CFR 312.62(c) — investigators must retain study records for 2 years after a marketing application is approved for the indication studied, or for 2 years after the investigation is discontinued and the FDA is notified.
- ICH E6 Good Clinical Practice, the study protocol DIAG723-PT-CL-001, and the equivalent national rules in each country where the Diamond Trial runs.
Where these periods differ, we apply the longest one that applies to your data.
If you are in the EU or EEA
The GDPR gives you a right to erasure, but Article 17(3) sets out when it does not apply. Two of those exceptions cover clinical trial records: processing necessary for compliance with a legal obligation (Article 17(3)(b)) and processing necessary for scientific research or archiving purposes in the public interest, where erasure would make that research impossible or seriously impair it (Article 17(3)(d)). Article 9(2)(i) and (j) permit us to process health data on those grounds.
Your other GDPR rights are unaffected — see Your other rights below.
How your retained data is held
Study data is stored under your Patient ID, not your name or email address. The key linking that code to your identity is held separately by your study site under their own legal duties, and is not part of the data DiagonalTx holds. Records are encrypted at rest and transmitted over TLS, and access is limited to authorised study personnel, auditors and regulators.
Summary
| Data | Deleted on request? | How long we keep it |
|---|---|---|
| Email address, password, PIN, biometric setting | Yes | Removed when the account is closed |
| Session and device tokens | Yes | Removed when the account is closed |
| Push notification registration, reminder times | Yes | Removed when the account is closed |
| Nosebleed episodes and “no nosebleed” confirmations | No | At least 25 years after the end of the trial |
| Survey responses | No | At least 25 years after the end of the trial |
| Problem reports you submitted, and any attachments | No | At least 25 years after the end of the trial |
| Audit trail of changes to study data | No | At least 25 years after the end of the trial |
Deleting your account is not the same as withdrawing from the study
These are two separate things, and doing one does not do the other.
Closing your app account
Handled by us, using the email address above. It ends your access to HHT Compass. It does not change your enrolment, and your study team may ask you to continue recording information another way.
Withdrawing from the Diamond Trial
Handled by your study doctor or study site, not by this page. You may withdraw at any time, without giving a reason, and without any effect on your medical care. Withdrawing stops the collection of new study data. Data collected up to that point is retained, for the reasons above.
If you want to stop taking part in the study, speak to your study team first. If you want both, tell your study team you are withdrawing and email us separately to close the account.
Your other rights
Even though the retained study data cannot be erased, you keep your other data protection rights. Depending on where you live, these may include the right to:
- ask what personal data we hold about you and get a copy of it
- have inaccurate data corrected
- ask us to restrict how your data is processed
- object to processing in certain circumstances
- complain to your national data protection authority
To exercise any of these, write to our Data Protection Officer at dpo@diagonaltx.com.
Contact
Account deletion and privacy requests
privacy@HHTCompass.com
App or technical problems
Use Menu → Support in the app, which shows the contact details for
your own study site.
Questions about the study, your health or withdrawing
Contact your study doctor or study site. Their details are on your informed consent
form.
Medical emergencies: this page and the HHT Compass app are not monitored for urgent medical issues. If you need urgent help, contact your study site directly or your local emergency number.