Privacy Policy
PRAXIS PRECISION MEDICINES
PRAXIS E-DIARY PRIVACY NOTICE
Last Updated: January 15, 2026
This Privacy Notice describes how Praxis Precision Medicines Inc. (“we”, “us”, “our”) collects, uses and discloses information about you when you use our Praxis E-Diary (the “App”). For the purposes of this Privacy Notice, “you” and “your” means you as the user of the App.
Please read this Privacy Notice carefully. By using any of the App, you agree to the collection, use, and disclosure of your information as described in this Privacy Notice. If you do not understand or agree to this Privacy Notice, please do not use or access the App.
1. CHANGES TO THIS PRIVACY NOTICE
We may modify this Privacy Notice from time to time, in which case we will update the “Last Updated” date at the top of this Privacy Notice. If we make material changes to how we use or disclose information we collect, we will use reasonable efforts to notify you (by posting notice of such changes on the App or by other means consistent with applicable law) and will take additional steps as required by applicable law. If you do not agree to any updates to this Privacy Notice, please do not continue using or accessing the App.
2. COLLECTION AND USE OF INFORMATION
When you use or access the App, we collect certain categories of information about you from a variety of sources. In addition to the specific uses discussed below, we may use this information in our legitimate interests to enhance the safety and security of our App, to provide customer support under our contract with you, to comply with applicable legal obligations, enforcing any applicable terms of service, and in our legitimate interests to protect our rights and the rights of our employees, users or other individuals.
Information You Provide to Us
Some features of the App may require you to directly provide certain information, including information about yourself. You may elect not to provide this information, but doing so may prevent you from using or accessing these features. Information that you directly submit through our App includes:
- Account information, such as registration PIN, username, password,. We use this information to perform our contractual obligations towards you, and where it is in our legitimate interest, to provide the App and to maintain and secure your account with us. If you choose to register an account, you are responsible for keeping your account credentials safe. We recommend you do not share your access details with anyone else. If you believe your account has been compromised, please contact us immediately.
- Physical and mental health history and information, such as your height, weight, heart rate and BMI; current and previous physical and mental health diagnosis and testing; current and previous use of certain medications; certain family history; information about your pain; mobility, diet and exercise information; disability information; seizure information, and health habits. This information includes information about your health and may be subject to a higher standard of protection under applicable laws. We use this information to conduct the study you participate in. For more information on the relevant lawful basis under data protection laws and, if applicable, the special condition we rely on to process your health information, please refer to the Informed Consent Form of the study.
- Any other information you choose to include in communications with us, for example, you communicate with our technical support, which we process to perform our contractual obligations towards you, or where it is in our legitimate interest to communicate with you.
Information Collected Automatically
We and third parties may also use tracking technologies to automatically collect certain information about your interactions with the App. This information is collected and used in our legitimate interest to understand and tailor your experience with the App. Such information includes:
- Information regarding your interaction with the App, such as log data and date and time stamps.
Information Collected From Other Sources
We may obtain information about you from outside sources, including information that we collect directly from third parties and information from third parties that you choose to share with us. Such information includes:
- Analytics data we receive from analytics providers.
- Medical records we receive from clinical trial sites, caregivers, and other healthcare providers. This information includes information about your health and may be subject to a higher standard of protection under applicable laws. We use this information to conduct the study you participate in. For more information on the relevant lawful basis under data protection laws and, if applicable, the special condition we rely on to process your health information, please refer to the privacy policy in the Informed Consent Form of your study.
Any information we receive from outside sources will be treated in accordance with this Privacy Notice. We are not responsible for the accuracy of the information provided to us by third parties and are not responsible for any third party’s policies or practices. For more information, see the section below, Third-Party Websites and Links.
Deidentified Information
Finally, as a matter of our legitimate interests, we may deidentify or anonymize your information such that it cannot reasonably be used to infer information about you or otherwise be linked to you (or we may collect information that has already been deidentified/anonymized), and we may use such deidentified/anonymized information for any purpose.
3. DISCLOSURE OF YOUR INFORMATION
We may disclose your information for legitimate purposes subject to this Privacy Notice, including the following categories of third parties:
- Our affiliates or others within our corporate group, in our legitimate interests.
- Vendors or other service providers who help us provide the App, such as for system administration, cloud storage, and security, in our legitimate interests.
- If you participate in a study, we share your information with the study team that conducts the study, as well as the organizations that support the study team.
- If you participate in a study, we may share personal information with the ethics committee or institutional review board that approved the study.
- Government and regulatory authorities, as required by law, including the U.S. Department of Health and Human Services, the Food and Drug Administration, the European Medicines Agency, and other federal or state government agencies.
- Third parties to whom you request or direct us to disclose information, to perform our contractual obligations towards you.
- Professional advisors, such as auditors, law firms, or accounting firms, in our legitimate interests.
- Third parties in connection with or anticipation of an asset sale, merger, bankruptcy, or other business transaction.
We may also disclose your information as needed to comply with applicable law or any obligations thereunder or to cooperate with law enforcement, judicial orders, and regulatory inquiries, to enforce any applicable terms of service, and to ensure the safety and security of our business, employees, and users.
4. INFORMATION STORAGE AND TRANSFERS
If you reside in the European Economic Area (“EEA”) or the United Kingdom (“UK”) or Canada, please note that the information that we collect from you will be transferred to, and stored at/processed in the United States. We will take all steps reasonably necessary to ensure that your information is treated securely and in accordance with this Privacy Policy. If you reside in the European Economic Area (“EEA”) or the United Kingdom (“UK”), any (onward) transfers of information outside the EEA or the UK will be subject to appropriate safeguards, such as the European Commission’s standard contractual clauses or the UK Information Commissioner’s international data transfer addendum to the EU standard contractual clauses, as relevant, unless the data transfer is to a country that has been determined by the European Commission or the relevant UK authorities, as applicable, to provide an adequate level of protection for individuals’ rights and freedoms for their information. Please contact us using the details below should you wish to examine a copy of the EU standard contractual clauses or UK international data transfer addendum.
5. DATA SECURITY AND RETENTION
Despite our reasonable efforts to protect your information, no security measures are impenetrable, and we cannot guarantee “perfect security.” Any information you send to us electronically, while using the App or otherwise interacting with us, may not be secure while in transit. We recommend that you do not use unsecure channels to send us sensitive or confidential information.
We retain your information for as long as is reasonably necessary for the purposes specified in this Privacy Notice. When determining the length of time to retain your information, we consider various criteria, including whether we need the information to continue to provide you the App, resolve a dispute, enforce our contractual agreements, prevent harm, promote safety, security and integrity, or protect ourselves, including our rights, property or products.
6. YOUR RIGHTS
Depending on where you are located, you may have certain rights in relation to your information:
- Access: You have the right to access information we hold about you, how we use it, and who we share it with.
- Portability: You have the right to receive a copy of the information we hold about you and to request that we transfer it to a third party, in certain circumstances and with certain exceptions.
- Correction: You have the right to correct any of your information we hold that is inaccurate.
- Erasure: In certain circumstances, you have the right to delete the information we hold about you.
- Restriction of processing to storage only: You have the right to require us to stop processing the information we hold about you, other than for storage purposes, in certain circumstances.
- Objection: You have the right to object to our processing of your information.
- Withdrawal of consent: Where we rely on consent to process your information, you have the right to withdraw this consent at any time. Please note that a number of these rights only apply in certain circumstances, and all of these rights may be limited by law. To exercise any of these rights, please refer to the informed consent form of your study or your institution’s agreement with Praxis. If you have complaints about how we process your information, please contact us using the details below and we will respond to your request as soon as possible. If you think we have infringed data protection laws, you can file a claim with the data protection supervisory authority in the EEA country in which you live or work or where you think we have infringed data protection laws, or with the UK Information Commissioner’s Office, as applicable to you.
7. HOW TO CONTACT US
Should you have any questions about our privacy practices or this Privacy Notice, please contact us as described in the informed consent form of your study or your institution’s agreement with Praxis.