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
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.
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.
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
Children Under The Age Of Thirteen (13)
Notification Of Changes
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.
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.