Privacy Policy

Last updated: May 2026  ·  druginducedmito.org

This Privacy Policy describes how the DIMD Initiative (druginducedmito.org), founded by Johanna Ihli, BSN, handles information collected through this website and the DIMD Registry. We are committed to protecting the privacy of all visitors and registry participants.

1. Information We Collect

This website does not require you to create an account or provide any personal information to access educational content.

Through the DIMD Registry intake form, we collect only the information you voluntarily provide, which may include:

• Your role (patient, caregiver, clinician, researcher, or other)
• The medication(s) of concern
• Approximate symptom onset and duration
• Body systems affected (selected from a checklist)
• Optional free-text notes describing your experience
• An optional email address, if you choose to provide one for follow-up

No identifying information is required. You should not include your name, date of birth, address, Social Security number, insurance information, or any other personal identifiers in your registry responses.

2. How We Use Your Information

Registry submissions are used solely for the following purposes:

• Research — building an evidence base for drug-induced mitochondrial dysfunction and related delayed multisystem injury patterns
• Education — informing public and clinician awareness about DIMD and FQAD
• Advocacy — supporting pharmacovigilance modernization, regulatory engagement, and policy development
• Public awareness — communicating the scale and pattern of drug-induced mitochondrial injury to the public and policymakers

All data used in any publication, report, presentation, or advocacy document will be de-identified and presented only in aggregate form. No individual submission will be identifiable in any output.

3. Email Address (Optional)

If you choose to provide an email address, it will be used only to:

• Confirm receipt of your submission
• Send occasional registry updates or follow-up questions (infrequent)
• Allow you to request withdrawal or clarification of your submission

Your email address will never be sold, shared, or used for commercial purposes. It will not be added to any marketing list.

4. Data Sharing

We do not sell, rent, or share your registry data with third parties for commercial purposes. Registry data may be shared in de-identified, aggregate form with:

• Collaborating researchers working within the DIMD research framework
• Regulatory bodies or policymakers as part of advocacy efforts (in aggregate/de-identified form only)
• Academic or public health publications

Form submissions are currently processed through Formspree (formspree.io), a third-party form handling service. Formspree's own privacy policy governs how they handle form data in transit. We recommend reviewing their policy at formspree.io/legal/privacy-policy.

5. Your Rights — Withdrawal and Deletion

If you provided an email address or another way to identify your submission, you may request deletion or withdrawal of your registry entry at any time by contacting us at admin-dimd@proton.me.

If you submitted anonymously (no email provided), your submission cannot be individually identified or removed, as no identifying information was collected.

6. Cookies and Tracking

This website does not currently use cookies, tracking pixels, or third-party analytics. If this changes, this policy will be updated to reflect it.

7. Website Security

This site is hosted on GitHub Pages and served over HTTPS. We take reasonable measures to protect the integrity of content and registry data, but no internet transmission is completely secure. Please do not include sensitive personal identifiers in your registry responses.

8. Children

This website is not directed at individuals under the age of 18. We do not knowingly collect information from minors. If you believe a minor has submitted registry information, please contact us at admin-dimd@proton.me and we will remove it.

9. Changes to This Policy

This Privacy Policy may be updated periodically. The "Last updated" date at the top of this page reflects the most recent revision. Continued use of this site following any changes constitutes acceptance of the updated policy.

10. Contact

For any questions, concerns, or requests regarding this Privacy Policy or your registry data, please contact:

DIMD Initiative
Johanna Ihli, BSN
admin-dimd@proton.me