Privacy Policy

EFFECTIVE DATE: MARCH 11, 2019 (referred to as the “Website”) respects the privacy of visitors to its websites and online services and values the confidence of its partners and users. The Website is a website service designed to inform users about the CARE-PWS clinical study, and upon a user's consent only, collect information from those interested in being considered for participation in these clinical studies. 

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 provide information about clinical trials.

The following are the key aspects of our service:

  • We operate on your consent only, which is established when you sign up

  • When you sign up with the Website, you consent to be connected to a clinical trial site and to service providers for the CARE-PWS clinical study

  • Your information is stored in a password-protected database

  • No information on the Website should be construed as medical and/or health advice 

The Website 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 thereunder. The Website, 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 register with our Services, or directly contact us with questions or feedback:

  • Contact information, such as your name, email address, postal address, and telephone number;

  • Information about whether your loved one has been diagnosed with Prader-Willi syndrome (PWS) and the symptoms they experience, such as type, diagnosis date, and method;

  • Your loved one’s name and demographic information, such as age information and gender; and

  • Your consent to use any information provided in order to connect you to CARE-PWS clinical study sites. 

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 email 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.


Other than for purposes of tracking aggregate information such as website usage, we only use the information you provide to put you in contact with CARE-PWS clinical study sites. We will not use your information for any other purpose.


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 will only share your information with clinical trial sites in the CARE-PWS clinical study. While we may share aggregate user information such as website usage, we will not share your specific information with any other entity.


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 are 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 email for such notification.


The Website 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, the Website 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 contact us at the email address provided below.

You may also request access to your information held by the Website and you may request that we correct or amend your personal data by contacting us at the email address provided below.


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. 


GDPR stands for General Data Protection Regulation. GDPR focuses on the protection of personal data, which is any information that relates to an identified or identifiable natural person. This includes a user’s names, addresses, physical or genetic information, IP addresses, location data, etc. GDPR provides a consistent standard of privacy and data protection that is mandatory across the European Union.

As part of GDPR, you have the right to request to view the information that’s been collected on you, and ask for it to be deleted.

  • To request to view the information that’s been collected on you by this system, please visit here.

  • To request a permanent deletion of your information from this system, please visit here.


As a convenience to our visitors, the Services may link to a number of sites, services, and other content that is 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 the Website 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