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NCI-CONNECT Rare Brain & Spine Tumor Network
 

My STORI App Privacy Policy and Terms of Use

National Institutes of Health / National Cancer Institute / Center for Cancer Research / Neuro-Oncology Branch 

This privacy policy (the “Policy”) and the Terms of Use were last revised on May 1, 2021.

Overview

The Neuro-Oncology Branch (NOB) at the Center for Cancer Research (CCR) of the National Cancer Institute (NCI) at the National Institute of Health (NIH) has created an app for brain tumor patients and caregivers to track, organize, and manage their symptoms and self-care activities. This Policy and the Terms of Use apply specifically to the My STORITM mobile application (the “App”). By using the App, you acknowledge that you accept the Policy and Terms of Use outlined here, which may be modified from time to time. 

What does this Policy Cover?

The My STORITM mobile application takes your privacy and data very seriously. Your use of the App is voluntary, and you may stop using it at any time by ceasing to log into the App and deleting it. This Policy  describes the kinds of information (the “Data”) the App collects and how it is collected, how the Data is stored, how the Data is used, and how the Data is shared.  This Policy does not apply to the practices of investigators, companies or institutions that NCI does not own or control, or to individuals that NCI does not employ or manage.  

Collection of Information You Provide in the App – The Data

The App will collect information from you that you, yourself, manually enter into the App.  This information will be stored locally for your personal use. This will include dates and times of when your symptoms, events and app logging occurred. This will also include responses to questions about symptoms (when and what symptoms have occurred, how you would describe your symptom), responses to severity levels of symptoms (rating on a scale of 1 to 10 how severe your symptoms and functions are), logged self-care activities (diet, exercise, sleep, medications or other self-care activities to manage your symptoms), calendar to include treatments (radiation, chemotherapy, surgery) and appointments (clinic, therapy, imaging).

The App will not collect the following information: 

  • The App will not collect your name, phone number, email or other personal identifier(s). 
  • The App will not access your personal contacts, text or email messages, or location data from your device. 
  • The App will not collect user or usage data without your explicit permission.
  • The App will not save your symptom and self-care reports onto your device without your explicit permission. 

How the App Stores the Data

Once you complete the questionnaire and responses, the Data is saved only on your device and when enabled on your iCloud account for your personal use. 

How the Data is Used

Manually entered information collected in the App will be used solely for you to track, organize, and manage your symptoms and self-care activities, and will not be sold or used for any other reason. 

How Is Personal Information Protected?

You do not have to give personal information to use the App. If you choose to provide us with additional information about yourself outside of the App through an e-mail message, survey, etc., we maintain the information only as long as needed to respond to your question or to fulfill the stated purpose of the communication.

For further information about NIH privacy policy, please contact the NIH Senior Official for Privacy at privacy@mail.nih.gov, call (301) 451-3426, or visit the NIH Privacy Program page. 

Disclosure of the Data

NCI does not disclose, give, sell, or transfer any Data about our My STORITM users, unless required for law enforcement, by statute, or if the users themselves have provided consent.

How the Data is Retained

The Data is only stored locally, and NCI does not independently store user data. The My STORITM  user can delete the Data from their phone and iCloud account at any point if they choose.

Terms of Use

Acceptance of the Terms of Use

By using the App, you agree to comply with these Terms of Use.  In the event that you object to any term or condition of these Terms of Use, any guidelines, or any subsequent modifications thereto or become dissatisfied with the App in any way, your sole recourse is to discontinue use of the App. 

Limitations and Terms Related to Your Use of the App

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. You must own or control access to 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. 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 protections and that the ownership of software and other intellectual property related to the App, as well the goodwill associated therewith, remains with HHS/NCI. You agree that any improvements or other changes to the App are the property of HHS/NCI. 

Medical Disclaimer

The App is not designed to deliver medical care, nor is the App intended to be professional medical advice or a substitute for such advice, or for diagnosis, treatment, care, cure, or prevention of any health conditions, and you should not rely on the App as such. You should always seek the advice of physicians or other qualified health care providers if you have questions about any medical condition or any information you receive from the App. Do not ignore or delay obtaining professional medical advice because of any interaction with the App. In the United States, call ‘911’ in the event of a medical emergency. 

General Disclaimer

To the maximum extent permitted by law, the App is provided “As Is” and “As Available”, with all faults and without warranty of any kind and NCI and its licensors disclaim all warranties, either implied or statutory, including, but not limited to, the implied warranties of merchantability, satisfactory quality, accuracy, quiet enjoyment, and non-infringement of third party rights. You acknowledge that your reliance on the App shall be at your sole risk and responsibility.  NCI makes no representations as to the reliability, accuracy, or completeness of the App, related content, or other information contained within or distributed via the App. Subject to applicable Federal law, in no event shall NCI be liable for any liabilities, losses, damages, claims, costs and expenses, including reasonable attorney's fees, that arise from (i) use or misuse of the App, (ii) your violation of the Policy and Terms of Use, or (iii) any other activity related to your use of the App (including personal injury, or any incidental, special, indirect or consequential damages whatsoever arising out of or related to your use or inability to use the App). 

Access or Delivery to Mobile Network is not Guaranteed

NCI is not responsible for the delivery of information and content from or to a mobile device as such delivery may fail due to circumstances or conditions beyond NCI's control. You understand and acknowledge that network services, including but not limited to mobile network services, are outside of NCI's control and NCI is not responsible or liable for such problems.

Message Transmission and Delivery by Your Network Operator

You understand and acknowledge that your use of the App from a terminal such as a mobile device is subject to any agreements you have with your network service provider.

Text and E-mail Messages Are Not Encrypted

Content distributed via the App, specifically that of email and text message, are unencrypted. As such, transmissions may be unknowingly and/or unintentionally intercepted by third parties. Your use of the App acknowledges this fact and releases NCI, its contractors, agents, representatives and affiliates from any such liability that may arise in the event of such unauthorized interception or access.

Text and E-mail Messages Stored on Your Device are Your Responsibility

As NCI does not maintain or have access to your device, e-mail server, and does not maintain or have access to networks outside of the domain and control of NCI, by using the App you agree that NCI bears no liability or responsibility for the security or control of content, e-mail, text message, or otherwise, once delivered.

Service May Be Limited by Your Operator or Your Device

As reliability and effectiveness of the App may be limited by your geographic location, selected network operator or your mobile device, you agree and accept that NCI is not responsible in the event the App or any portion of the App does not function.

Mobile Network Operators May Not Support All Users

NCI is unable to guarantee the reliability and delivery of content or the App to your mobile device since technology such as mobile networks and internet service providers are outside of NCI's control. Accordingly, by using the App you acknowledge that any such disruptions shall not be the responsibility of NCI.

Spam is Prohibited

You will not use the App to transmit, either directly or indirectly, any bulk mobile messages or unsolicited commercial mobile messages. 

Changes in Content

NCI reserves the right to update, modify, terminate, suspend or discontinue any aspect of the App, including the availability of any features at any time. NCI may also impose limits on certain features and services or restrict your access to parts or all of the App without notice or liability.

Severability

The Policy and Terms of Use constitute the entire agreement between you and NCI and govern your use of the App. NCI's failure to exercise or enforce any right or provision of the Policy or Terms of Use shall not constitute a waiver of such right or provision. If a portion or provision within any section of the Policy or Terms of Use is found by a court of competent jurisdiction to be invalid, the parties agree that the court should endeavor to give effect to the parties' intentions as reflected in the provision, and the other provisions of the Policy and Terms of Use remain in full force and effect.

Jurisdiction

The App has been developed by the Neuro-Oncology Branch at NCI to be controlled and operated under terms of the NCI, and is subject to applicable U.S. Federal Law, as construed and applied by U.S. Federal Courts in the District of Columbia. 

Updates to the Policy and Terms of Use

NCI may update this Policy and the Terms of Use as necessary. The "Last Updated" legend at the top of this page indicates when this Policy and the Terms of Use were last revised. Any changes will become effective when we post the revised Policy and Terms of Use on the App and visually indicate a new update has been made. Your use of the App following these changes means that you accept the revised Policy and Terms of Use. You are encouraged to periodically review the Policy and these Terms of Service to be sure you are familiar with the most current version.

Contact

If you have any questions about this App, contact the NCI Neuro-Oncology Branch at mystori@nih.gov.

If you would like to learn more about the NCI Neuro-Oncology Branch and the NCI’s Center for Cancer Research, you can visit Neuro-Oncology Branch page and Center for Cancer Research website.

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