General
This Privacy Notice explains how Atsena Therapeutics Inc., (“Atsena”, “we”, or “us) collects, uses, shares, stores and protects personal information when you interact with us through our websites or online resources (collectively, the “Services”). It also describes the rights you may have under applicable data protection laws and how you can exercise them.
Atsena is responsible for the uses of your personal information. This Privacy Notice explains how we use your data and protect your privacy when you use the Services. Atsena also uses personal information for purposes outside the scope of the Services, and for that, you will receive a separate privacy notice, in line with applicable laws, for the different activities which include but are not limited to job recruitment and employment, third party management, or clinical research.
When you contact us through a study-specific webpage, your initial enquiry will be handled in accordance with this Privacy Notice. If you proceed to participate in a clinical study, you will receive a separate clinical research privacy notice applicable to that activity.
By continuing using the Services, you agree to the use of your personal information in accordance with this Privacy Notice. We take privacy seriously and encourage you to read this Notice carefully.
Meaning of personal information
“Personal information” means any information which relates to a person and allows that person to be identified either directly or indirectly. This information may include, but is not limited to, your name, mailing address, e-mail address and telephone number.
Personal information does not include information that has been anonymized or aggregated in such a way that there is no serious possibility it can be used to identify an individual, whether on its own or in combination with other information.
What personal information does Atsena collect and for which purposes?
You may interact with Atsena through our websites or online resources, for different purposes, and depending on these purposes, Atsena may collect and use certain types of personal information including information that directly identifies you such as your name, contact details and email address as well as medical information or information about your health, which you provide in case you make any inquiry about our research studies, or through study-specific webpages.
When Atsena enables study-specific webpages, for study referral purposes, we may ask you to provide certain personal information, by completing an online form or through patient communication such as email. The specific information requested may vary depending on the webpage, the study, and the purpose of the form, but may include the following categories of personal information:
- Identifying and contact information: name, email address phone number, and preferred method of contact;
- Demographic information: age or age range, date of birth where needed, gender, and geographic location (region, country, state, city);
- Condition and trial interest: disease of interest and your level of interest in participating in a clinical study;
- Referral and trial status information: whether you have been referred to a clinical trial site, which site (if applicable), your trial status, and your willingness to travel or consider alternate sites;
- Medical records and testing status: whether medical records have been obtained or are in process, genetic testing status (yes/no), and OCT record status (yes/no);
- High-level medical history, collected as yes/no responses where possible: prior gene therapy history, prior surgery history, and visual acuity if voluntarily provided;
- Healthcare provider information: the name of your referring or treating healthcare provider, if voluntarily provided.
Atsena will only request information that is relevant to responding to your inquiry, supporting study referral activities, communicating with you, and, where applicable, helping determine whether referral to a clinical trial site may be appropriate.
Some information you may choose to provide, such as information about your health and genetics, constitutes sensitive personal data under certain applicable laws. We process this information only on the basis of your explicit consent, for the primary purpose of responding to your inquiry and, where appropriate, referring you to appropriate investigator sites. We may also use your information for compatible purposes, including follow-up communications, patient engagement or advocacy activities, and relevant educational or study-related communications. We will not use your information for unrelated purpose, unless you provide separate informed consent.
Atsena encourages you to avoid providing medical or health information through our websites, email communication or online resources, even if your intention is to receive more information about our research studies. Please do not include detailed medical or health information in any free-text fields on the form nor attach any documents, in case there is a possibility to do so.
Atsena may also receive or collect, during your interactions with us, certain personal information that does not directly identify you, such as computer or device serial numbers, IP addresses or information relating to a company (“legal person”). If you submit personal information relating to other people, you represent that you have the authority to do so.
If you interact with Atsena through social media platforms, your social media profile information including name, email address, contact details, comments and reactions will also be received.
Atsena handles the personal information provided in the contact request only to process and answer your request regarding our products and services and to get in touch with you.
How does Atsena share your personal information?
Your personal information may be accessed by third parties, contracted by Atsena, for business-related purposes, such marketing, advertising, data management, or technical support.
In the context of study-specific patient communications, your personal information will be shared with clinical investigator sites to which you are being referred, and with the technology platform provider engaged by Atsena to facilitate patient engagement and referral management. These recipients are bound by contractual confidentiality obligations and will only use your information for the purposes described in this Notice.
Atsena will not sell, share, or otherwise transfer your personal information to third parties other than those indicated in this Privacy Notice.
In connection with our activities and for the purposes described in this Privacy Notice, your personal information may be accessed or transferred, on a need-to-know basis, to the following categories of recipients:
- Atsena personnel;
- Atsena suppliers and services providers that provide services to us;
- Atsena IT systems providers, cloud service providers, database providers and consultants;
- Any third party to whom we assign or novate any of our rights or obligations; and
- Atsena advisors and external lawyers in the context of the sale or transfer of any part of our business or its assets.
These third parties are under a contractual obligation of confidentiality and will not use, share or sell, your personal information, except as may be permitted by Atsena, as required by law, or as stated in this Privacy Notice.
Atsena may disclose your personal information to a third party in the event that the business or a part of it and the customer data connected with it is sold, assigned or transferred, in which case we would require the buyer, assignee or transferee to treat personal information in accordance with this Privacy Notice.
Also, Atsena may disclose your personal information to a third party if we are required to do so because of an applicable law, requests from public and government authorities (including court order, subpoena, or governmental regulation), even outside your country of residence; if we need to enforce our terms and conditions; when we believe in good faith that the disclosure is necessary to protect legal rights, the security or integrity of this website; to protect your safety or the safety of others; as part of any criminal or other legal investigation or proceeding in your country or in other countries; or to third parties, advisors, and other entities to the extent reasonably necessary for development of or to proceed with the negotiation or completion of a corporate or commercial transaction.
International and Interprovincial Transfer and Storage Information
Your personal information may be processed, accessed, or stored in a country other than the one where you are located. If Atsena transfers your personal information to another jurisdiction, we will implement appropriate safeguards to protect it, as required by applicable law.
How does Atsena protect your personal information?
Atsena has implemented security measures to protect your personal information from loss, theft, unauthorized access, disclosure, copying, use or modification. Atsena has taken steps to ensure that the only personnel who are granted access to your personal information are those with a business ‘need-to-know’ or whose duties reasonably require such information.
Access to sensitive personal data, including health and genetic information collected in the context of study-specific patient communications, is restricted to personnel directly involved in clinical study referral activities and is subject to enhanced access controls.
How long does Atsena store personal information?
Atsena collects and uses personal information only to manage and respond to your interactions with us through our website and our social media pages. Atsena deletes personal information after the interaction has been completed, unless we need to keep it longer to comply with legal obligations, maintain security, prevent fraud, or resolve disputes.
Information received through study-specific webpages, collected for the purposes of referring you to appropriate investigator sites, will be deleted after recruitment for the study ends.
What are your rights and how can you exercise them?
Whenever Atsena processes personal information, we take reasonable steps to keep it accurate and up to date for the purposes for which it was collected. Depending on your country or region of residence, you may have specific rights regarding your personal information under applicable data protection laws, including rights to access, correct, delete, restrict, or object to processing, among others. Where we process your personal data based on your consent, you have the right to withdraw that consent at any time. Withdrawal of consent will not affect the lawfulness of any processing carried out before the withdrawal. To learn about the rights available to you under your jurisdiction’s laws, or to exercise any of your rights including to withdraw your consent to the handling of your data, please contact us using the “Contact Us” section below.
Children’s Information
Atsena’s website is not directed at children. However, we recognise that parents or legal guardians may submit personal information about a minor child when enquiring about paediatric clinical studies. In such cases, the parent or guardian represents that they have the legal authority to provide consent on behalf of the child and that the information provided is accurate. If you are submitting information about a child, please ensure you are that child’s parent or legal guardian. If you believe information about children has been mistakenly provided to Atsena and you would like to request that such personal information be removed, please refer to our “Contact Us” section below.
How frequently does Atsena update this Notice?
Atsena keeps our Privacy Notice under regular review and updates it as and when required. The last version of the Notice was last updated on 15 May 2026.
When changes are made to this Privacy Notice, they will become immediately effective when published in a revised Privacy Notice posted on our website https://atsenatx.com.
Contact Us
If you wish to contact Atsena regarding how we use your personal information or you wish to exercise your data privacy rights, please email our Data Protection Officer (DPO) at [email protected] or write to us at the following addresses:
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Atsena Therapeutics Inc. 8 Davis Drive, Suite 300 Durham, NC 27713 |
Mailing Address PO Box 12056 Durham, NC 27709 |
EU & UK Data Protection Law
For compliance with EU & UK Data Protection Law obligations, Atsena has appointed the following representatives:
- EU Data Protection Representative: Research and Development Privacy Consultancy S.L.; C/ José Abascal 44, 4th floor, 28003 Madrid – Spain
- UK Data Protection Representative: RD Privacy UK Limited – 71-75 Shelton Street, Covent Garden, London, United Kingdom, WC2H 9JQ
