Privacy Policy

EFFECTIVE DATE: September 10, 2018 respects the privacy of visitors to its websites and online services and values the confidence of its partners and users. is a website service designed, upon a user’s consent only, to collect information from those interested in sharing information about their medical condition and experience in clinical trials.

This Privacy Policy and Notice of Information Practices (“Privacy Notice”) sets forth the website’s practices regarding the collection, use, and disclosure of information that you may provide through the websites and online services that we operate and that link to this Privacy Notice (collectively, the “Services”).  Please read the entire Privacy Notice before using our Services.  By using the Services, you agree to abide by the terms of this Privacy Notice.


The role of this website is to collect information from patients and caregivers regarding their experience with a specific medical condition.

The following are the key aspects of our service:

  • We operate on your consent only, which is established when you sign up
  • We will only contact you if you consent to be contacted
  • Your information is stored in a password-protected database
  • No information on should be construed as medical and/or health advice
  • Your information will be deleted within 1 week of the public results of the survey being shared is not a “covered entity” for purposes of determining applicability of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the rules promulgated there under., as a website service, does not provide medical care or health advice.


We may ask you for some or all of the following types of information when you complete this survey, or directly contact us with questions or feedback:

  • Contact information, such as name, e-mail address, postal address, and telephone number;
  • Demographic information, such as age information and gender;
  • Information about a certain condition that you are interested in, such as type, diagnosis date and method;
  • Your consent to use any information provided in order to connect you to information about the development of relevant treatments;
  • Communications preferences;
  • Correspondence and other information that you send to us.

We also may collect certain information automatically when you visit the Services, including:

  • Your browser type and operating system;
  • Your Internet Protocol (IP) address, which is the number automatically assigned to your computer whenever you access the Internet and that can sometimes be used to derive your general geographic area;
  • Other unique identifiers, including mobile device identification numbers;
  • Pages you view and links you click on within the Services;
  • Information collected through cookies, web beacons, and other technologies;
  • Information about your interactions with e-mail messages, such as the links clicked on and whether the messages were opened or forwarded; and
  • Standard server log information.

We may use cookies, pixel tags, and similar technologies to automatically collect this information.  Cookies are small bits of information that are stored by your computer’s web browser.  Pixel tags are very small images or small pieces of data embedded in images, also known as “web beacons” or “clear GIFs,” that can recognize cookies, the time and date a page is viewed, a description of the page where the pixel tag is placed, and similar information from your computer or device.  By using the Services, you consent to our use of cookies and similar technologies.  You can decide if and how your computer will accept a cookie by configuring your preferences or options in your browser. However, if you choose to reject cookies, you may not be able to use certain online products, services or features on the Services.


We may use information that we collect through the Services for a variety of purposes, including to:

  • Maintain or administer the Services, perform business analyses, or for other internal purposes to improve the quality of our business, the Services, and other products and services we offer;
  • Customize and personalize your use of the Services; and
  • As otherwise described to you at the point of collection or pursuant to your consent.


We are committed to maintaining your trust, and we want you to understand when and with whom we may share the information we collect.

We may share your information as follows:

  • Service Providers.  We may share your information with service providers that perform certain functions or services on our behalf (such as to host the Services, manage databases, perform analyses, or send communications for us).
  • Other Parties When Required By Law or as Necessary to Protect the Services.  We may disclose your information to third parties in order to:  protect the legal rights, safety, and security of our corporate parents and affiliates, and the users of our Services; enforce our Terms of Use; prevent fraud (or for risk management purposes); and comply with or respond to law enforcement or legal process or a request for cooperation by a government entity, whether or not legally required.
  • In Connection With a Transfer of Assets. If we sell all or part of our business, or make a sale or transfer of assets, or are otherwise involved in a merger or business transfer, or in the event of bankruptcy, we may transfer your information to one or more third parties as part of that transaction.
  • Aggregate Information.  We may disclose to third parties information that does not describe or identify individual users, such as aggregate website usage data or demographic reports


We maintain reasonable security procedures to help protect against loss, misuse or unauthorized access, disclosure, alteration or destruction of the information you provide through the Services.   For example, only authorized employees are permitted to access personal information, and they may do so only for permitted business functions. In addition, we use firewalls to help prevent unauthorized persons from gaining access to your personal information. Our data is stored and hosted by systems that provide the highest security features available.

However, please note that no data transmission over the Internet or stored on a server can be guaranteed to be 100% secure.  As a result, while we strive to protect your information and privacy, we cannot guarantee or warrant the security of any information you disclose or transmit to us online and cannot be responsible for the theft, destruction, or inadvertent disclosure of your information.  In the event that we believe that the security of your information may have been compromised, we will give you appropriate notice as quickly as possible, including by email.  You consent to our use of e-mail for such notification.

CHILDREN’S PRIVACY does not in its advertising efforts target anyone younger than 18 years of age. However, if a minor happens to find our website on their own, respects the privacy of children and we are committed to complying with the Children’s Online Privacy Protection Act (COPPA).  The Services do not knowingly collect, use, or disclose personal information from children under the age of 13 without prior parental consent, except as permitted by COPPA.


If at any time you wish to stop receiving emails or other communications from us, or if you have submitted information through the Services and would like to have that information deleted from our records, please email us at

You may also request access to your information held by and you may request that we correct or amend your personal data by contacting us by email at


The Services are currently designed for use by users within the United States. By using the Services, you consent to the collection, storage, processing, and transfer of your information in and to the United States, or other countries and territories, pursuant to the laws of the United States.


As a convenience to our visitors, the Services may link to a number of sites, services, and other content that are operated and maintained by third parties.  These third parties operate independently from us, and we do not control their privacy practices. Such links do not constitute an endorsement by of the content or the persons or entities associated therewith. This Privacy Notice does not apply to third-party content. We encourage you to review the privacy policies of any third-party to whom you provide information.


We reserve the right to modify this Privacy Notice from time to time without prior notice. Such changes will be effective immediately upon posting to this Service.  Your continued use of the Services after any modification to the Privacy Notice will constitute your acceptance of the new terms and conditions.


If you have any questions about this Privacy Notice, you may contact us at: