Please read the Cavernous Malformation Registry ("CMR") Privacy Policy (the “Privacy Policy”) and the Website (defined below) terms and conditions (the “Terms and Conditions”) before using any portion of this website (“CMR”).  By using the CMR, you agree to all the terms of the Privacy Policy. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the CMR.

The CMR is owned and operated by Angioma Alliance d/b/a Alliance to Cure Cavernous Malformation, a US 501(c)3 not-for-profit organization. The Alliance to Cure Cavernous Malformation respects your privacy and has written this Privacy Policy to make you aware of the information the Alliance to Cure Cavernous Malformation 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 Alliance to Cure Cavernous Malformation is not abiding by its posted Privacy Policy, please contact us via email at coordinator@alliancetocure.org or by mail (Alliance to Cure Cavernous Malformation, 977 Seminole Trl, #367, Charlottesville, VA 22901).

General

The Alliance to Cure Cavernous Malformation respects your privacy. The Privacy Policy outlines the type of information the Alliance to Cure Cavernous Malformation 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. 

Collection, Use, and Disclosure of Information

Collection of Information. The information you provide to the Alliance to Cure Cavernous Malformation will be maintained in a secure, HIPAA-compliant database. Any information that could identify you will not be shared without your express consent per the informed consent document.

Use and Disclosure of Information. Identified and de-identified data may be shared outside this database, with your express consent per the informed consent document.  Your data may be shared with the following:  (1) Representatives of the Alliance to Cure Cavernous Malformation, (2) Researchers, doctors, or scientific laboratories working under an IRB-approved protocol who are researching cavernous malformations; (3) Researchers under an IRB-approved protocol who are collecting, testing, storing and analyzing biospecimen samples; (4) Organizations and/or institutions who may host surveys or questionnaires outside of the Alliance to Cure Cavernous Malformation; (5) Pharmaceutical companies and other for-profit companies interested in investigating in tests or treatments for cavernous malformation or for recruiting in future clinical trials. (6) Patient Advocacy Organizations and other non-profit organizations who are pursuing treatments for cavernous malformation; (7) Ordinal Data, Inc., the technology company that builds and maintains the infrastructure (e.g., website and database) behind the CMR. (8) North Star Institutional Review Board (IRB) for research oversight.

Any information you provide to third parties whom you have contacted through the CMR will be subject to their policies concerning privacy and nondisclosure of information.  We encourage you to familiarize yourself with those policies.

The Alliance to Cure Cavernous Malformation may employ independent contractors, vendors, and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or 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 personally identifiable information, when providing such products or services.

Withdrawal of Information

You may withdraw from the CMR at any time for any reason. Your identifiable information will be removed after withdrawal. However, your data collected before withdrawing may remain part of the CCM Registry database and may not be removed. Additionally, any information already released to external parties may be irretrievable. In addition, the CMR may not be able to delete certain information to comply with the law.

Protection of User Information

All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy.  The Alliance to Cure Cavernous Malformation will use commercially reasonable methods to protect the security of information and data submitted to the Website. However, users should keep in mind 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.

Ownership of Information

All of the information you provide to the CMR in connection with the Website is managed and owned by the Alliance to Cure Cavernous Malformation. You may withdraw from the CMR at any time for any reason. Simply click the “withdraw” button on your registry account page. However, if you withdraw your consent, your data collected before withdrawing may remain part of the study database and may not be removed. Additionally, any information already released to external parties may be irretrievable. In addition, the CFR may not be able to delete certain information to comply with the law.

Log Files; Web Beacons

The Alliance to Cure Cavernous Malformation 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 Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.

The Alliance to Cure Cavernous Malformation may also employ “web beacons” (also known as clear gifs) to track the 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.

Website Links

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

Communications From the CMR

We will notify users of updates and other valuable information about the CMR, 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 Alliance to Cure Cavernous Malformation and related entities and to receiving such updates and information.

The Alliance to Cure Cavernous Malformation encourages related entities, including its business partners, to follow best practices concerning email communications, security, and privacy.  However, the Alliance to Cure Cavernous Malformation cannot control and assumes no responsibility for any contact of users by related entities, including its advocacy partners.

In the case of emails coming from the CMR, such emails will be identified as coming from the CMR and will include instructions on how to unsubscribe from future emails.

Required Disclosures

The Alliance to Cure Cavernous Malformation reserves the right to disclose your personal information, without notice, if required to do so by law or in the good faith belief that such disclosure is necessary to: (i) conform to the edicts of the law or comply with legal process served on the Alliance to Cure Cavernous Malformation; (ii) protect and defend the rights of the Alliance to Cure Cavernous Malformation, and (iii) act under exigent circumstances to protect the personal safety of users of the Website or the public.

Contact Us; Member Accounts

If a user elects to contact the Alliance to Cure Cavernous Malformation through the contact information provided on the Website or registers for an account, the user may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing their inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration). The Alliance to Cure Cavernous Malformation stores this data to reply to the submitted inquiry or to establish and service the member account.  The submitted information is then owned by the Alliance to Cure Cavernous Malformation and subject to the terms detailed in the Privacy Policy.

Children Under The Age Of Thirteen (13)

The Alliance to Cure Cavernous Malformation cannot prevent children under the age of thirteen (13) from visiting the Website; however, 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.  To comply with the Children's Online Privacy Protection Act, the Alliance to Cure Cavernous Malformation will not knowingly collect personally identifiable information from children under thirteen (13).  By providing personally 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, The Alliance to Cure Cavernous Malformation learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, the Alliance to Cure Cavernous Malformation will take the appropriate steps to delete such information.

Notification Of Changes

You should review the Privacy Policy whenever you use the Website to be aware of how your information is used.  The Alliance to Cure Cavernous Malformation reserves the right to change the Privacy Policy at any time without prior notice.

Data Security

The data we collect is stored in a commercial-grade, cloud-based, HIPAA-compliant, secure data center. Data is backed up daily. A third party may hold off-site backups to guard against data loss. Appropriate security measures minimize risks such as loss of confidentiality, identity theft, electronic fraud/security breaches, electronic monitoring, stalking or bullying, hacking, and phishing. Only authorized personnel can access the data center. All data transmission (uploading and downloading) occurs over secure, encrypted channels.

Confidentiality

The CMR is deeply committed to issues of privacy and identity. The CMR will take every available measure to protect personal information against loss, misuse, unauthorized access, disclosure, and deletion. The information you provide to the CMR will be maintained in a secure database. While we will do our best to keep your personal information private, we cannot guarantee absolute confidentiality.