The Myotonic Dystrophy Family Registry (the “Registry”) is committed to protecting the privacy of our participants and families. To better protect your privacy, we are providing this notice explaining our information practices. To make this notice easy to locate, you can access it via a link on the Registry home page located at www.myotonicregistry.org, We define personal information as your: name(s), email address, mailing address, phone number, survey responses, registry information and non-public information included in your correspondence with us.
2. Collection, Use and Disclosure of Information
Collection of Information. All of the information you provide to the Registry will be maintained in a secure database, and any information that could identify you will not be shared without your consent, unless otherwise required by law.
Use and Disclosure of Information. The goal of the 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, social security number have been removed) gathered from this Registry will be made available to registrants to provide data that could lead to better treatments and care management. The Registry will perform data searches in response to specific questions 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.
The Registry may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Registry or to the services provided in the Registry, 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 Registry. These Outside Contractors may have limited access to information collected in the Registry, 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.
Unless you opt out, as provided in your registration, personally identifiable information may be shared with the owner of the Registry, the Myotonic Dystrophy Foundation.
3. Withdrawal of Information
4. Protection of User Information
5. Ownership of Information
All of the information you provide to the Registry in connection with the Registry website is owned by you and safeguarded by the Registry. 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.
When you visit the Registry, we may send one or more cookies to your computer that will uniquely identify your browser. Usage of a cookie is in no way linked to any personally identifiable information while on the Registry. If a user rejects the cookie, he or she may still use the Registry.
7. Log Files; Web Beacons
The 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 Registry, and understand how our participants are using the site. IP addresses are not linked to personally identifiable information. The 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.
8. Website Links
9. Required Disclosures
You understand and agree that the Registry may disclose information provided by you if it is our understanding that such disclosure is required by applicable law.
10. Contact Us: Member Accounts
If you elect to communicate with the Registry through contact information provided on the Registry site, or by registering for an account, in order for the Registry to assist you or answer your question, we may ask you for one or more of the following:
- E-mail address
- E-mail subject
- A message explaining your question, if applicable
Certain profile and account information (in the case of a member account registration).
11. Children Under The Age Of Thirteen (13)
12. Notification of Changes