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Our mission at Novartis is to provide a first-class, innovative medical research tool—the app—for use in a clinical research study being conducted by Novartis (the “study”) for patients over 18 years old with ocular disease.
The FocalView app uses a mix of surveys, data users choose to share with the app from Apple HealthKit, and tasks that activate phone sensors to collect and track the health and symptoms of its users. With your help, we hope to gain insights from this research tool to help improve the assessment of ocular symptoms, visual function, and quality of life, as well as to develop more sensitive clinical trial endpoints, and to collect more accurate patient reported outcomes.
The sponsor of this study is:
If you have any questions at any time before, during, or after the research study, you can contact www.novartis.com/about-us/contact
If you choose to use the app, you must first review and acknowledge the informed consent form for the study, which will be presented to you within the app
By using the app, you consent to the collection, use, and sharing of your information as described in this Focalview app privacy policy (this “privacy policy”) and as outlined in the informed consent process embedded within the app. To the extent anything in this privacy policy conflicts with the informed consent process in the app, the terms of the informed consent will control.
This study is designed for persons 18 years of age or older living in the United States. We do not knowingly collect or solicit personal information from anyone under the age of 18 or knowingly allow such persons to register for the app without parental consent. If you are under 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, without parental consent. In the event that we learn that we have collected personal information from a person under age 18 without parental consent, we will delete that information. If you believe that we might have any information from or about a person under the age of 18, please contact us using the contact information below.
Global (Switzerland)
Tel: +41 61 324 11 11
Fax: +41 61 324 80 01
Monday - Friday
8:30 a.m. - 5:00 p.m. GMT+1
United States
Fax: +1 862 778 21 00
Monday - Friday
8:30 a.m. - 5:00 p.m. EST
This study will require you to:
You need to install and use the Focalview app on your phone in order to participate in the study. If you received a patient research study ID number from a physician, you will need it to register and complete the informed consent process in the app that explains the risks and benefits of the study. If you do not have a patient research study ID number, you may also participate in the study by completing the informed consent process in the app. As part of the informed consent process, you will confirm your agreement to participate in the study. Afterward, we will ask you some questions about the study and ask you to complete an electronic registration process. Registration will include entering certain personal information, such as your email address, and other general information. We will also ask you to share other information collected by Apple HealthKit with the app. You do not have to share any of this additional information from Apple HealthKit to participate in the study.
We will ask you to answer questions about yourself, your medical history, and your current health. You may choose to leave any questions you do not wish to answer blank. Additionally, we will ask you questions about your visual acuity and mood. With these questions, you can leave any that you do not wish to answer blank.
We will ask you to perform specific tasks associated with your vision while holding or using your mobile iPhone® (i.e., Apple device, only iPhone® release 5+ will work), including tasks such as a reading test, visual acuity test, and contrast sensitivity test. You will be prompted to complete each task once a month. Each task should take no more than 5 minutes to complete. You have the right to refuse to answer particular questions or participate in particular aspects of the study at any time.
We will remind you to complete these surveys and tasks by sending you notifications on your iPhone® (if you choose to permit push notifications). You may choose to act at your convenience, either then or later.
We will not provide you with medical advice or ask you to make any health decisions based on the use of the app. You should discuss health decisions directly with your healthcare provider.
The app collects the following types of information:
meaning information that alone or in combination with other information may be used to readily identify, contact, or locate you (such as your name, address, email address, username, phone number, or patient research study code). We do not consider personal information to include data that has been de-identified or aggregated so that it does not allow a third party to easily identify a specific individual. The app collects personal information when you manually enter it into the app, such as when you register to participate in the study.
meaning statistical or demographic information (such as height, weight, birth date, or gender) or other health-related information (such as your health conditions, mood, and data about your vision). The app collects this information when you choose to provide to the app by entering it manually or sharing it from your Apple HealthKit and when you provide answers to study surveys. When this information is combined or stored with your personal information, we will treat it as personal information.
meaning data collected through the sensors on your iPhone® during study \ tasks (such as visual acuity tasks and reading tests) or from wearable technology and other applications that you authorize, including Apple HealthKit (such as your step count, exercise distances, calories burned, or exercise time). We will also collect location data from your iPhone to calculate “Steps Outside My Home Location” and may use this data for future functionality (example: additional notifications) which we will then inform you about. You can choose to contribute just some or none of this data and still participate in the study. Please note that we will NOT access your personal contacts, other applications, personal photos or videos, nor text or email messages on your iPhone®.
such as information about your app usage (e.g., features used, content viewed, dates and times of interactions) and technical data about your device, such as operating system, model, device identifier, and IP address. The app collects this technical data automatically when you download the app and as you use it
When general health information, sensor and activity data, and technical data is used for research as part of the study, Novartis assigns such “study data” a random code instead of using your personal information. Novartis uses the study data it collects in this app and the insights gained from the study for purposes of improving the assessment of ocular symptoms, visual function, and quality of life, as well as more sensitive clinical trial endpoints and more accurate patient reported outcomes.
Novartis may use any information collected through the app, including personal information, for internal and service-related purposes connected to providing, improving, and facilitating the app and study.
Novartis may also use your personal information to communicate with you for informational and operational purposes, such as managing your participation in the study, providing technical support, and other similar administrative purposes. We may also use your personal information to contact you to ask if you would be willing to participate in additional research opportunities, including linking your app data with other health data, with your permission.
Novartis will not use your personal information or other information collected by the app for marketing or advertising purposes.
Novartis may share any information it collects (including study data and your personal information) along with a copy of your informed consent with:
The app may contain links to external websites. We are not responsible for the privacy policies and/or practices on websites that may be accessed through these links. When following a link to another website, you should read that website’s privacy policy.
Novartis takes steps to ensure that information collected through the app is treated securely and in accordance with this privacy policy. Unfortunately, the Internet and any technical system cannot be guaranteed to be 100% secure or error-free, and we cannot ensure or warrant the security of any information you provide to us.
Access to the app on your iPhone® may be protected by a biometric authentication mechanism (such as Touch ID) or is protected by a passcode you select after downloading the app. You should take steps to prevent unauthorized access to your account and personal information by selecting and protecting your credentials appropriately and limiting access to your iPhone®.
We recommend that you run a current operating system (OS) on your iPhone®, review the privacy/security settings often, and restrict any unnecessary access. apps may run in the background of your device and may have unanticipated impact on the operations of your device (e.g., battery drainage). If you do not have an unlimited data/text plan, you may incur additional charges. At the conclusion of the study, you may wish to remove the app from your device.
During the study, only Novartis and service providers engaged by Novartis will be provided access to process data you generate or provide through or with the app. As noted above, Novartis replaces any personal information (such as your name, email address, and date of birth) connected with study data with a code to help protect your identity and minimize the ability of researchers and others to readily identify you from such coded study data. Please note that Novartis may retain the ability to re-identify study data if doing so is needed for research integrity purposes or legal purposes, and may share personal information and re-identified study data with others at Novartis who need to see such information to ensure that the research meets legal, regulatory, or institutional requirements.
You may choose not to install the app. If you choose not to install the app, you will be unable to participate in the study.
You may choose to not provide certain information when you register. You may also choose not to answer certain questions in the surveys. You can leave any question that you do not wish to answer blank. You may choose to share some, all or none of your sensor and activity data.
You may choose to receive or stop push notifications at any time. “Push notifications” are messages that are sent to your iPhone® to remind you of what you need to do in the study. The app will send you push notifications throughout your participation in the study, to make sure that you know to do certain things as part of the study. You can choose to turn push notifications on or off in the Settings of your iPhone®.
Through the app, you may access, and in some cases, edit or delete certain personal information and other information stored locally in the app.
You may stop all collection of information by the app at any time by withdrawing from the study on the profile page within the app or uninstalling the app. If you uninstall the app ora withdraw from the study, we will retain all of the study data about you that was collected prior to that point and will continue to use such study data as described in this privacy policy. If you wish to have your study data deleted or have questions about withdrawing from the study, you will need to contact the study team at the contact information below.
PLEASE NOTE: When you update or delete information, we may maintain a copy of the unrevised information in our server and in our study records to track the data entry into the study, to assure the integrity of the study, to comply with our legal obligations and protect our rights
The information you can view and update may change as the app undergoes further development. Please note that any information that is automatically uploaded from the app cannot later be changed or updated. If you have any questions about viewing or updating information we have on file about you, please contact us using the contact information below.
When you download the app, you receive a non-exclusive, non-transferable, non-assignable license (without the right to sublicense) to install and use one copy of the app solely for your personal, non-commercial use in connection with the study. You must own or control the device on which you download the app. By downloading and using the app, you agree that you will not do anything to interfere with or disrupt the operation of the app, will provide only accurate and current information through the app, and will not impersonate anyone else in your use of the app. You further agree not to transmit content that you do not have the right to transmit or that infringes the rights of any party, and you agree to use the app in compliance with all applicable laws. You understand that the app or portions of it may be subject to patent, copyright, trademark, and other intellectual property protection and that the ownership of software and other intellectual property related to the app, as well as the goodwill associated therewith, remains with Novartis or its licensors. You agree that any improvements or other changes to the app or the study itself are the sole property of Novartis.
Global (Switzerland)
Tel: +41 61 324 11 11
Fax: +41 61 324 80 01
Monday - Friday
8:30 a.m. - 5:00 p.m. GMT+1
United States
Fax: +1 862 778 21 00
Monday - Friday
8:30 a.m. - 5:00 p.m. EST
This software is provided by the copyright holders and contributors "AS IS" and any express or implied warranties, including, but not limited to, the implied warranties of merchantability and fitness for a particular purpose are disclaimed. in on event shall the copyright owner or contributors be liable for any direct, indirect, incidental, special, exemplary, or consequential Damages (including, but not limited to, procurement of substitute goods or services; loss of use, data, or profits; or business interruption) however caused and on any theory of liability, whether in contract, strict liability , or tort (including negligence or otherwise) arising in any way out of the use of this software, even if advised of the possibility of such damage.
The software is provided "AS IS", without warranty of any kind, expres or implied, including but not limited to the waraties of merchantability, Fitness for a particularI purpose and noninfringement. In no Event shall the authors or copyright holders be liable for any claim, damages or other libility, whether in an action of contract, tort or otherwise, arising from, out of or in connection with the software or the use or other dealings in the software.
Novartis Pharma AG (“Novartis”) knows you care about how your information is used and shared. Please read the following to learn more about the Novartis Focalview researchKit app (“app”) and how we use and disclose information collected through the app, including personal information (as defined below) and health-related information.Please note that all information collected by the app will be processed in the United States. You must currently live in the United States in order to participate in the study.
This privacy policy is effective as of June 22, 2017. We may amend this privacy policy from time to time. If we make a material change to this privacy policy, we will contact you before the change goes into effect and obtain your consent to any such changes as may be required by law.