Privacy Policy

ALKConnect is committed to protecting the privacy of our participants. To better protect your privacy, we provide this notice explaining our information practices. To make this notice easy to locate, we make it available as a link on our home page. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information and non-public information included in your correspondence with us.

When you contact the ALKConnect Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it., or you use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within ALKConnect or our professional advisors for a response. A copy of your correspondence may be retained at the ALKConnect home office and also by the responding individual.

ALKConnect has established and maintains a mailing database. The mailing list may include families of affected individuals, friends, physicians, scientists, contributors and others interested in ALK+ NSCLC lung cancer.

ALKConnect is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the privacy and security of all personal information in our possession. Registry staff who are provided access to personal information will be instructed in the confidentiality requirements for the registry. Your participation in this research will be kept private to the extent permitted by law. However, it is possible that other people may become aware of your participation in ALKConnect. We might have to release your private information in a few specific situations—if it is required by the any of the following:

  • Food and Drug Administration (FDA) or representatives from regulatory agencies in other countries
  • Chesapeake Institutional Review Board
  • Law enforcement officials

You must read this Privacy Policy (the "Privacy Policy") and the Website (defined below) terms of use (the "Terms and Conditions") prior to using any portion of the ALKConnect Website located at (the "Website"). By using the Website, you agree to all the terms of the Privacy Policy and Terms and Conditions. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Website.

The Website is owned and operated by PatientCrossroads, a California based company. ALKConnect respects your privacy and has written the Privacy Policy so that you are aware of the information ALKConnect collects from you, how that information is protected, and how it is used. If you have any questions or comments regarding the Privacy Policy, or you feel that the ALKConnect is not abiding by its posted Privacy Policy, please contact us at: This email address is being protected from spambots. You need JavaScript enabled to view it.

1. General

This Privacy Policy outlines the type of information ALKConnect collects from the users of the Website and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the Website. We encourage you to review the Privacy Policy periodically for any updates or changes.

2. Collection, Use and Disclosure of Information

a. Collection of Information. The Website collects all of the information you provide when you register with ALKConnect online. The Website also collects information from you automatically through "cookies" as described in Section [6] below.

b. Use and Disclosure of Information. The goal of this registry is to make the information you provided searchable, while protecting your identity. De-identified data (information from which all personal identifiers such as name, address, social security number have been removed) gathered from this profile will be made available to registrants of the Website in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. Rather than providing others with access to the information in the registry, ALKConnect will perform the searches for specific questions within the registry and provide de-identified reports back to you or the requesting party.

De-identified information may be disclosed to third parties and otherwise used in accordance with legal requirements.

ALKConnect may employ independent contractors, vendors and suppliers ("Outside Contractors") to provide specific services and products related to the Website or to the services provided on the Website, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Website and the services provided on the Website. These Outside Contractors may have limited access to information collected on the Website, including protected health information and personally identifiable information. In the course of providing such products or services, Outside Contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.

3. Withdrawal of Information

At any time, you have the right to withdraw your information from the Website registry database. You may exercise this right by contacting the ALKConnect Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it. and your profile will be removed.

4. Protection of User Information

ALKConnect will use commercially reasonable methods to protect the security of information and data submitted to the Website. We employ best practices from our networking to our secure servers to protect data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.

5. Third Party Notifications/Advertising

ALKConnect reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. These companies may use information you provided on this Website (excluding your name, address, email address or telephone number) in order to provide advertisements or relevant notifications on the Website about goods and services that may be of interest to you. ALKConnect will require such companies to follow best practices with respect to the collection and use of non-personally identifiable information; however, ALKConnect assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.

6. Cookies

When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser. In addition, in the course of serving advertisements to this site, our third-party advertisers may place or recognize a unique "cookie" on your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Cookies may be used by ALKConnect to enable it to track and target the interests of users to enhance their experience on the Website. If a user rejects the cookie, he or she may still use the Site. Some of ALKConnect business partners, advertisers and sponsors use cookies, but ALKConnect has no access to or control over these cookies.

7. Log Files; Web Beacons

ALKConnect may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol ("IP") address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Website, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to personally identifiable information. ALKConnect may also employ "web beacons" (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally-identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.

8. Website Links

The Website may contain links to other web sites. This Privacy Policy applies solely to information collected on or submitted to the Website. ALKConnect is not responsible for the privacy practices of other sites linked to the Website or third party advertisements served on the Website. ALKConnect encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.

9. Communications From ALKConnect

From time to time, ALKConnect or other related entities will notify users of updates and other valuable information about ALKConnect, the Website and related clinical and research information. By using the Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by ALKConnect and related entities, and to receiving such updates and information. ALKConnect encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, ALKConnect cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from ALKConnect such emails will clearly be from ALKConnect and will include instructions on how to unsubscribe from future emails.

10. Required Disclosures

You understand and agree that ALKConnect may disclose information provided by you if in its good faith belief such disclosure is required by applicable law.

11. Contact Us; Member Accounts

If you elect to contact ALKConnect through contact information provided on the Website, or register for an account, you may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing your inquiry (in the case of a "contact us" inquiry), and certain profile and account information (in the case of a member account registration). ALKConnect stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.

12. Children Under The Age Of Thirteen (13)

No part of our Website is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Website at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act ALKConnect will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Website including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, ALKConnect learns that personally identifiable information has been collected from persons under the age of thirteen (13), ALKConnect will take the appropriate steps to delete such information.

13. Notification of Changes

You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. ALKConnect reserves the right to change the Privacy Policy at any time, without prior notice.