EpiWatch: Privacy Statement

Track Your Seizures and Medications as You Help Advance Epilepsy Research

EpiWatch Privacy Policy

Please read the following information to learn about how Johns Hopkins University (“JHU”) will use information that is collected through the EpiWatch (the “App”). By using the App in any manner, you acknowledge that you accept the practices and policies outlined in the EpiWatch Privacy Policy (this “Privacy Policy”). You consent that we will collect, use, and share your information as described in this Privacy Policy.

Scope of this Privacy Policy

This Privacy Policy covers JHU’s treatment of personally identifiable information (“Personal Information”) that JHU gathers when you are accessing or using the App. This Privacy Policy does not apply to the practices of companies or institutions that JHU does not own or control, or to individuals that JHU does not employ.

Your use of the App will allow you to provide JHU with Personal Information, including but not limited to your name, zip code, email address, ethnicity, work status, income level, relationship status, family seizure history, military service, parental status, driving status, seizure history, current seizure status, medications and HealthKit information (such as age, gender, height, weight, date-of-birth, step count, distance walking/running, distance cycling, flights climbed, etc.). The App collects your Personal Information for the purposes of a research study being conducted at JHU called EpiWatch, A Seizure Research Study (“the Study”).  If you choose to provide us with Personal Information through the App, you must first review and acknowledge the informed consent form for the Study, which will be presented to you within the App.

If you are between the ages of 16 and 18, you must not attempt to register for the App and you must not send any information about yourself to us, including but not limited to your name, address, telephone number, or email address unless JHU receives appropriate parental consent in the informed consent form. If JHU learns that it has collected Personal Information from a user of this App between ages 16 and 18 without appropriate parental consent, JHU will delete that information. Users under the age of 16 are not permitted to register for the study under any circumstances. If JHU learns that it has collected Personal Information form a user of this App who is under 16, JHU will delete that information. 

In addition to the Personal Information that you provide to JHU for the purposes of the Study, the App may also collect certain standard information, such as internet protocol address and details of how you used the App such as features used, content viewed and downloaded, the dates and times of your interactions with the App, and other information. JHU or its third-party provider may use this information to understand, customize, and improve user experience with the App and the Study.

JHU or its third-party provider may gather general anonymous behavior data about you to help JHU or its third-party provider to better understand patient population make-up and how to improve outreach to potential sub-groups of patients under-represented in the study. JHU will not sell such data.  JHU will not use such data to create or deliver ads.  JHU will use such data to understand and improve clinical trial recruitment.

Disclosure of Information

Except as described in this Privacy Policy or as provided for in the Study, JHU will not sell, rent, or lease, your Personal Information. JHU may provide your Personal Information to affiliated researchers or third parties who are providing services on behalf of this App if that information is reasonably necessary for the third party to perform their functions (“Third-Party Participants”). While we request that all Third-Party Participants maintain the confidentiality of such Personal Information, JHU does not control the privacy practices and policies of its Third Party Participants. Additionally, JHU may  to the extent permitted by applicable law, disclose your information to comply with state and federal laws, in response to a court order, judicial or other government subpoena or warrant, or to otherwise cooperate with law enforcement or other governmental agencies, or to protect the safety, rights, or property of JHU or the public.

JHU may combine Personal Information that has been anonymized with anonymized Personal Information of other Study participants. Anonymized data means data for which certain identifiers (first name, last name, email address) have been separated and stored in a separate secure database and replaced with a randomly generated unique user id to track all subsequent interactions between the mobile app and the back end application. The combined anonymized data may then be transferred to a statistical engine for analysis.  Researchers from the Study team and Study partners may analyze the anonymized data. Additionally, this Study may give you the option to share your anonymized, coded data more broadly, with other researchers worldwide, for use in this research and beyond. If this option is available and you choose to share your data broadly, your anonymized Personal Information may be added to a Study dataset and may be made available to qualified researchers.

You may have the option to share data from your mobile device’s iOS Health app with the App. Unless you agree to share your data through and with the App, you will not be able to include it in the Study. Once you agree to share your data through and with the App, such data becomes covered by this Privacy Policy. JHU is not responsible for the data practices of the iOS Health app in any way.

Review and Deletion of Personal Information 

Within the App, you may be able to review and amend certain Personal Information. If you wish to access, rectify, delete or block any other Personal Information, you may contact JHU at EpiWatch@jhmi.edu or by calling 410-955-0771. JHU may retain all submitted Personal Information for backups, archiving, prevention of fraud and abuse, analytics, satisfaction of legal obligations, or where JHU otherwise reasonably believes that it has a reason to do so, as permitted by applicable law.

You may stop all collection of information by the App at any time by withdrawing from the Study within the App or uninstalling the App. If you uninstall the App, JHU will retain all information that was collected prior to that point and may continue to use such information as described in this Privacy Policy.  

Changes to This Privacy Policy

JHU may change this Privacy Policy from time to time. Any changes will be posted on this page with an updated revision date. Your continued use of the App after the revised Privacy Policy has become effective indicates that you have read, understood, and agreed to the then-current version of this Privacy Policy.

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