Last updated: July 2026
This notice explains what information we collect through the NDI Foundation trial candidate screening, why we collect it, and what rights you have over it. We've written it in plain language on purpose — if anything is unclear, please contact us.
The NDI Foundation is a 501(c)(3) nonprofit organization dedicated to improving the lives of people with Nephrogenic Diabetes Insipidus (NDI) or AVP-R. We support NephroDI Therapeutics on research and the development of NDI-5001, a potential treatment for hereditary NDI/AVP-R. This trial candidate screening helps us identify and contact people who may be interested in, and eligible for, participating in the NDI-5001 clinical trial.
When you complete this trial candidate screening, we collect:
We use this information to:
We do not use your information for advertising, and we do not sell it to anyone.
GDPR-level standard applied to all respondents
We process your personal data on the basis of explicit consent. The screening form asks for your permission before we store anything. Because this collects health information (a "special category" of personal data under GDPR), we require explicit, informed consent — the "I agree" option on the form.
You can withdraw your consent at any time by contacting us (see below). Withdrawing consent does not affect the lawfulness of processing that occurred before withdrawal.
We share your information only with the research sites conducting the trial — specifically, the site coordinators responsible for screening candidates in your area. Each site can see only the candidates assigned to it. We do not share your data with any other third parties, and we do not share it for commercial purposes.
Our data is stored using Supabase, a secure database platform used solely for storage; it is not given independent access to use your data.
Data is stored in the United States. By submitting this form, respondents outside the United States — including those in the European Union, United Kingdom, and other countries — consent to their personal and health information being transferred to and stored in the United States. US privacy law may differ from the laws in your country.
We retain your information for as long as it is relevant to NDI/AVP-R trial-recruitment activities, or until you request deletion — whichever comes first. We review our data holdings periodically and delete records that are no longer needed.
Regardless of where you live, you have the right to:
To exercise any of these rights, contact us at the address below. We will respond within 30 days.
For privacy requests, questions, or concerns, please email:
office@orcasicon.com
You also have the right to lodge a complaint with your local data protection authority if you believe your data has been processed unlawfully.