Privacy Policy and Notice

Our Commitment to Privacy

This website is managed by Quintiles. Quintiles is committed to protecting your privacy. This Privacy Policy and Notice ('Policy') describes how Quintiles uses, releases and protects any personal information that we receive from an individual's use of this website.

As a user of this website, you have the right to know how we protect personal information that we receive from you. You also have certain responsibilities.

Personal information basically means any information that can be used to identify who you are or the person whom the information concerns.

Your Role, Responsibilities, and Risks

  • You should be familiar with how our website works and read all of our policies.
  • You should be aware what information is collected on this website, how it is stored and used.
  • You should know that this website is not in any way intended as a substitute for professional medical advice and should not be taken as treatment suggestions or relied upon as the basis for any decision or action. Always seek the advice of a qualified healthcare professional for medical advice or treatment.

This website is not intended for use by individuals who have not reached the age of legal majority in their country. Specifically, that is the age at which a person is recognized by law to be an adult and responsible for any legal obligations created by his or her actions.

Your Rights and Choices

  • You have the right to know the information collection and storage practices of this website.
  • You may change your mind at any time after you have provided any information and have the right to know how you can opt-out of any information collection, release, or use.
  • You have the right to know how personal information we receive from or about you will be used and by whom. 
  • You have the right to know to whom we may release such personal information that we receive.
  • You can choose at any time to not receive email from us by contacting us as described in the section of this Privacy Policy titled ‘Access, Correction, Deletion, and Removal of Personal Information’.

What You Can Expect From Us

  • We will protect any personal information we receive through the website at all times in accordance with applicable laws, industry standards and our legal obligations.
  • We will notify any changes to our information collection and storage practices via updates to this Privacy Policy.
  • We will notify any person by email as necessary, so that we may help protect them from harm, embarrassment or distress, if for some reason their personal information was released to or accessed by unauthorized persons.

The Information We Receive

Quintiles may receive personal information through direct user input and Quintiles also automatically receives information about how you use our website through “cookies” and web logs.

This policy applies to all information received through the website, both automatically and through direct user input. We receive this information in several ways, which are described below.

1. User Input

Registration is not required for use of this website. Anyone can visit the website, read our content, and request further information about how to participate in the registry. Any person who wishes to participate in the registry is asked to supply us with their contact and location information such as name, telephone number, country and email address.  

We forward this information to a coordinating center who will contact the person directly about their participation in the registry. The coordinating center will ask for medical information from the person who wishes to participate and for their permission to contact their doctor to collect further information during registry participation.

Any person who does not wish to participate in the registry but who provides an email address through this website for the purpose of being contacted about a clinical research study of similar interest in the future may receive a communication through the following Quintiles' patient community website,

All information provided by users is stored in a secure Quintiles database for the duration of the registry. Please see sections below about the ways in which Quintiles protects personal information we receive from users. 

2. Web Logs

Quintiles uses standard Web logs that record basic data about people who visit our websites.

The following information is contained in these logs:

  • The date and time of the visit
  • The pages of our website viewed during the visit
  • The IP address of the computer used to visit the site (computers automatically generate an IP address as they surf the Internet. IP addresses are also used to track new versus return visitors to the website and the contact information submission form)
  • The type of Web browser used to view our website
  • The website visited immediately before coming to our website.

We do not normally seek to identify individuals from Web logs. However, Web logs may be used to identify an individual who we have reason to suspect tried to damage our website or use it in an unauthorized way. If we have reason to believe that there has been a violation of computer security or related laws, we may share our Web logs with law enforcement agencies.

3. Cookies

A cookie is a piece of data or a file that a website can send to your Internet browser which may then store it on your computer. Cookies store information such as the pages you visited, the website features you used, and the amount of time you visited a particular webpage. They are also a means of keeping track of a user's preferences during a visit to a website. For example, users expect the application to "remember" their searches so that this information does not have to be entered again for each search. In order to provide persistence of such search criteria, Quintiles stores a unique identifier in a “temporary” or “session” cookie that only exists during the browser’s session with the website. When a new search is started, the identifier can be extracted from the session cookie and used to request detailed search information for that user from our database.

Our cookies do not find or search for personal information about you and do not link to or record any personally identifiable information about you.

In addition, visitors clicking through to this website from either Google or Yahoo! Search engine sponsored Ads will have a cookie placed on their computer for 30 days. This cookie allows Google and Yahoo!, along with Quintiles, to measure the effectiveness of their search engine advertising.

No cookies are used to track an identifiable individual's movement through the website or on the Internet. They are only used to enhance the usability of the site.

The following cookies are used on our website:

  • Google Analytics cookies
  • Internal session cookies for our contact information submission forms
  • Advertising cookies are occasionally used to track how users reach our website.

You always have the right to refuse the storage of cookies on your computer, or to disable and/or delete cookies at any time. It is important that you understand that if you block or otherwise reject our cookies, you will not be able to use certain of the website's essential features. We suggest that you accept cookies because they allow you to get the most out of your website experience, and to take advantage of some of the website’s essential features. By clicking through the website, we understand this means you have accepted our cookies.

This website does not use third-party cookies.

For more information about cookies, and to see what cookies have been set on your computer and how to manage and delete them, visit

Sharing Information with Third Parties

It is possible that we may need to disclose personally identifiable information and personal health information in response to a search warrant, subpoena, or court order. This is a possibility that could confront any record keeper. Disclosures may also be made to protect our legal rights, to protect the security or integrity of our website, to take precautions against liability, or during emergencies if physical safety is believed to be at risk. These types of disclosures are unlikely, but they are possible and so we describe them here.

Aggregate Data Use

Quintiles combines and uses non-personal information (aggregated data) from our Web logs and the registry questionnaire to study how our site is being used. We will periodically analyze this aggregated data and use what we learn to make improvements to our website. In addition, we may share this aggregated data (which does not contain any information which can identify an individual) with our clinical research partners to assist them in better designing their websites or clinical trials. 

Access, Correction, Deletion, and Removal of Personal Information

Any person may request to access, correct or delete personal information about them that is entered into the website which is inaccurate or incomplete at any time by emailing Quintiles at We will respond to these requests by email within ten (10) business days. Any registry-related or other clinical research study emails that you have agreed to receive and decide you no longer want to receive, can be stopped by you clicking on the ‘unsubscribe’ link at the bottom of the email, or you can contact us at When you choose to unsubscribe, your registration for the registry’s communication program will be cancelled and you will no longer be able to use your profile to access or receive any information or services. Participants can remain enrolled in the registry after unsubscribing from the communication program.

Backup Files

Like all responsible websites, Quintiles maintains backup files as a protection against natural disasters, equipment failures, or other disruptions. Backup files protect you and us because they lessen the risk of loss of valuable data. Removing a record from our principal files does not remove that record from any of the backup systems. It may take up to six months before all information in a backup record is completely erased through the normal recycling of backup files. In the meantime, as long as backup records exist, they receive the same privacy and security protections as our other records. 

International Transfers

Quintiles provides this Website and its services from the United States of America. Accordingly, any personal information we receive through direct user input will be stored on our servers located in the USA. You should be aware that not all countries offer the same standards of data protection and personal information privacy as those that may apply where you reside. However, your personal information will always be treated and used by Quintiles in accordance with this Website privacy policy. In addition, Quintiles is certified to the US Department of Commerce’s Safe Harbor principles for off-line, online and manually processed personal data transferred to Quintiles from the European Economic Area (EEA) and Switzerland.

Information Security

Processing personal information in a secure manner is essential to our business and for your protection as a user. Maintaining a secure network and server system is in the best interests of our users and our research partners. Quintiles processes and stores personally identifiable information using industry standard physical, technical, and administrative safeguards to secure such personal information against foreseeable risks such as unauthorized use, access, disclosure, destruction, and modification. Such security safeguards include use of encryption, password protection and Quintiles user authenticated access rights. While we will use reasonable efforts to create a secure, safe and reliable Website, the confidentiality of any communication or material transmitted to or from the Website over the Internet cannot be guaranteed.

In addition to this Website Privacy Policy, we also comply with the Quintiles Corporate privacy policy statement available at

Children's Privacy

Protecting the privacy of the very young is especially important. For that reason, we do not receive or keep information on our Website received from people we know are under 13 years of age. If you are a parent or guardian of a child under 13 years old and believe that we may have mistakenly received information from your child, please contact us using the details provided in this Privacy Policy.


Quintiles is committed to protecting the privacy of persons whose personal information we receive through this Website’s use. We have posted this Privacy Policy to communicate the specifics of this commitment. In addition, Quintiles will address any complaints or questions regarding this policy or its implementation. If you have a complaint or question about our Privacy Policy, please email

Quintiles will respond to your comments or concerns within ten (10) business days from the time your inquiry is received.

Links to Other Websites

Our Website may contain links to other websites. You should carefully review the privacy policies and practices of other websites, as we cannot control or be responsible for their privacy policies or practices. For links to other Quintiles web properties, please review those privacy terms as well as they may differ from those on this website.

Notification of Changes

As we provide more information and services on our Website and as privacy laws and regulations change, we may need to revise or update our Privacy Policy from time to time. We will always change the “Last Updated” date on the Privacy Policy to reflect when it was last revised. If we make a meaningful change to the Privacy Policy, we will notify you here, by email or by means of a notice on the website home page. However, we will always continue to protect personal information we receive through this website according to the law and as described by our current Privacy Policy.

How to Contact Us

Should you have other questions or concerns about these privacy policies, please contact us at

This Privacy Policy and Notice was last updated on 8 July 2015.