Collection, Use, and Disclosure of Information
Collection of Information. All of the information you provide to the RARE Registry will be maintained in a secure, HIPAA compliant database, and 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 of this database, with your express consent per the informed consent document. Your data may be shared with the following: (1) Representatives of Melanoma Research ALliance, (2) Researchers, doctors, or scientific laboratories working under an IRB-approved protocol who are researching melanoma; (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 RARE Registry; (5) Pharmaceutical companies and other for-profit companies interested in investigating in tests or treatments for patients facing rare melanomas or for recruiting in future clinical trials. (6) Patient Advocacy Organizations and other non-profit organizations who are pursuing treatments for rare melanoma subtypes; (7) Ordinal Data, Inc., the technology company who builds and maintains the infrastructure (e.g. website and database) behind the RARE Registry. (8) North Star Institutional Review Board (IRB) for research oversight.
Any information you provide to third parties, whom you have contacted through the RARE Registry will be subject to their policies with respect to privacy and nondisclosure of information. We encourage you to familiarize yourself with those policies.
The Melanoma Research ALliance 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 personally identifiable information, in the course of providing such products or services.
Withdrawal of Information
You may withdraw from the RARE Registry at any time, for any reason. However, if you withdraw your consent, your data collected prior to withdrawing may remain part of the study database and may not be removed. Additionally, any information that was already released to external parties may be irretrievable. In addition, the RARE Registry 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 RARE Registry in connection with the Website is managed and owned by the Melanoma Research Alliance. You may withdraw from the RARE Registry at any time, for any reason. To withdraw, simply click the “withdraw” button on your registry account page. However, if you withdraw your consent, your data collected prior to withdrawing may remain part of the study database and may not be removed. Additionally, any information that was already released to external parties may be irretrievable. In addition, the RARE Registry may not be able to delete certain information to comply with the law.
The Melanoma Research Alliance 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) and other sites in order to provide advertisements or relevant notifications on the Website and other sites about goods and services that may be of interest to you. The Melanoma Research Alliance will encourage such companies to follow best practices with respect to the collection and use of non-personally identifiable information and personally identifiable information that was not obtained from your participation on the Website; however, The Melanoma Research Alliance assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
Log Files; Web Beacons
The Melanoma Research Alliance 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 Melanoma Research Alliance 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.
Communications From the RARE Registry
We will notify users of updates and other valuable information about the RARE 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 Melanoma Research Alliance and related entities, and to receiving such updates and information.
The Melanoma Research Alliance encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the Melanoma Research Alliance cannot control, and assumes no responsibility for, any contact of users by related entities, including its advocacy partners.
In the case of emails coming the RARE Registry, such emails will clearly be from the RARE Registry and will include instructions on how to unsubscribe from future emails.
The Melanoma Research Alliance 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 law or comply with legal process served on the Melanoma Research Alliance; (ii) protect and defend the rights of the Melanoma Research ALliance, 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
Data that we collect is stored in a commercial-grade, cloud-based, HIPAA compliant, secure data center. Data is backed up daily. Offsite backups may be held by a third party 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 RARE Registry is deeply committed to issues of privacy and identity. The RARE Registry will take every available measure to protect personal information against loss, misuse, and unauthorized access, disclosure, and deletion. The information you provide to the RARE Registry will be maintained in a secure database. While we will do our best to keep your personal information private, we cannot guarantee absolute confidentiality.