Privacy Policy

You must read this Privacy Policy and the Website (defined below) terms of use (the “Terms and Conditions”) prior to using any portion of the Compass Registry Website located at www.compassregistry.org (the “Website”). Any terms we use in this Privacy Policy without defining them have the definitions given to them in the Terms of Use. 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 Compass Registry respects your privacy and has written the Privacy Policy so that you are aware of the information the Compass Registry collects from you, how that information is protected, and how it is used. To better protect your privacy, we provide this notice explaining our information practices. We call this notice our Privacy Policy. To make this notice easy to locate, we make it available as a link on our home page. Our obligations under this Privacy Policy are in addition to the obligations in our Informed Consent Agreement. To the extent this Privacy Policy conflicts with the Informed Consent Agreement, the Informed Consent Agreement will prevail.

The Website is owned and operated by PatientCrossroads, a California based company. If you have any questions or comments regarding the Privacy Policy, or you feel that the Compass Registry 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

a. This Privacy Policy outlines the type of information the Compass Registry collects from the users of the Website and how it is shared with other parties. We encourage you to review the Privacy Policy periodically for any updates or changes. 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.

b. 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. You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. If you use the Website after any changes to the Privacy Policy have been posted, that means you agree to all of the changes. Use of information we collect now is subject to the Privacy Policy in effect at the time such information is collected.

2. Collection, Use and Disclosure of Information

a. Collection of Information. All of the information you provide to the Compass Registry will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law. An example of express written consent is the Informed Consent Agreement found here.

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 where all personal identifiers such as name, address, has 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.

De-identified information may be disclosed to third parties and otherwise used in accordance with legal requirements. Access to personal information will be limited to the Compass Registry staff. These individuals will be instructed in the confidentiality requirements of the organization. No identifiable information will be shared with other users without your expressed permission. Your participation in this research will be kept private to the extent permitted by law.

c. The Compass Registry 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.

d. Information determined to be confidential can only be released by written or verbal permission by the subject of the information or organization that owns the information. Verbal permission may be valid in limited circumstances. Any general release must be in writing. The Compass Registry web site provides links to other sites that may be of interest. The Compass Registry is not responsible for the privacy practices or content of other such web sites.

3. Withdrawal of Information

a. At any time, you have the right to withdraw your information from the Website registry database. You may exercise this right by contacting the Compass Registry Coordinator atThis email address is being protected from spambots. You need JavaScript enabled to view it. and your profile will be removed. Any de-identified information accessed prior to withdrawal will continue to be used.

4. Protection of User Information

a. All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy. The Compass Registry 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. You must prevent unauthorized access to your account and personal information by selecting and protecting your password. 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. Ownership of Information

a. Your information may contribute to the development of inventions or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products or other such discoveries and you will receive no economic benefit.

6. Third Party Notifications

a. The Compass Registry reserves the right, in its discretion, to allow third parties to provide 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 relevant notifications on the Website. The Compass Registry will require such companies to follow best practices with respect to the collection and use of non-personally identifiable information; however, the Compass Registry assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.

7. Cookies

a. 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 the Compass Registry to enable it to track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, he or she may still use the Site. Some of the Compass Registry’s business partners, advertisers and sponsors use cookies, but the Compass Registry has no access to or control over these cookies.

8. Log Files; Web Beacons

a. The Compass Registry 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. The Compass Registry 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. We use Google Analytics to help analyze how our users use the Website. Google Analytics uses cookies to collect information such as how often our users visit the Website, what pages they visit, and what other sites they used prior to coming to the Website. We may use the information we get from Google Analytics to improve our Website. Google Analytics collects the IP address assigned to you on the date you visit the Website, but not your name or other personally identifying information. We do not combine the information generated through the use of Google Analytics with your personal information. Although Google Analytics plants a persistent Cookie on your web browser to identify you as a unique user the next time you visit the Website, the Cookie cannot be used by anyone but Google. Google’s ability to use and share information collected by Google Analytics about your visits to the Website is restricted by the Google Analytics Terms of Use and the Google Privacy Policy. You may find additional information about Google Analytics at www.google.com/policies/privacy/partners/. Finally, you can opt out of Google Analytics by using the following add-on: https://tools.google.com/dlpage/gaoptout/.

9. Website Links

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

10. Communications to and from the Compass Registry

a. The Compass Registry has established and maintains a mailing database. The mailing list may include families of affected individuals, friends, physicians, scientists, contributors and others interested Autoimmune hemolytic anemias. Of note, if an outside organization sends us information for distribution to the Compass Registry participants, we may mail it to you after the mailing is approved.

b. From time to time, the Compass Registry or other related entities will notify users of updates and other valuable information about the Compass Registry, 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 the Compass Registry and related entities, and to receiving such updates and information. The Compass Registry encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the Compass Registry 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 the Compass Registry such emails will clearly be from the Compass Registry and will include instructions on how to unsubscribe from future emails.

c. When you contact the Compass Registry 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 the Compass Registry or our professional advisors for a response. A copy of your correspondence may be retained by the responding individual.

11. Required Disclosures

a. You understand and agree that the Compass Registry may disclose information provided by you if in its good faith belief such disclosure is required by applicable law. Additionally, we might have to release your personal information if it is required by the any of the following:

12. Contact Us; Member Accounts

a. If you elect to contact the Compass Registry 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). The Compass Registry stores this data in order to reply to the submitted inquiry or to establish and service the member account. The information you can view, update, and delete may change as the Website changes. If you have any questions about viewing or updating information we have on file about you, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.. The submitted information is then subject to the terms detailed in this Privacy Policy.

13. Children Under The Age Of Eighteen (18)

a. The Compass Registry is unable to prevent children under the age of eighteen (18) from visiting the Website; however, no part of our Website is directed at or intended for persons under the age of eighteen (18). If you are under the age of eighteen (18), 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, the Compass Registry will not knowingly collect personally identifiable information from children under the age of eighteen (18). 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 eighteen (18) years of age and that you agree to comply with the Privacy Policy. If, at any time, the Compass Registry learns that personally identifiable information has been collected from persons under the age of eighteen (18), the Compass Registry will take the appropriate steps to delete such information.