Privacy Policy

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.

You must read this Privacy Policy (the “Privacy Policy”) and the Registry terms of use (the “Terms and Conditions”) prior to using any portion of the Registry.  By using the Registry, 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 Registry.

The Registry is owned and operated by Myotonic Dystrophy Foundation (MDF). The Registry respects your privacy and has written the Privacy Policy so that you are aware of the information the Registry 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 Registry is not abiding by the posted Privacy Policy, please contact us at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

1. General

This Privacy Policy outlines the type of information the Registry collects from the users of the Registry 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 Registry website. We encourage you to review the Privacy Policy periodically for any updates or changes.

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

At any time, you have the right to withdraw your information from the Registry database or, you may also opt out of providing personally identifiable information to the Myotonic Dystrophy Foundation. You may exercise this right by contacting the Registry Coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it and your profile will be removed or your information will no longer be provided to MDF.

4. Protection of User Information

All users are required to review and abide by the Registry Terms and Conditions and the Privacy Policy. The Registry will use commercially reasonable methods to protect the security of information and data submitted to the Registry. We employ best practices, from our secure network set-up to our secure servers, to protect data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Be sure to take special care to safeguard any passwords, ID numbers, or other special access features used in the Registry.

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.

6. Cookies

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

The Registry may contain links to other websites. This Privacy Policy applies solely to information collected on or submitted to the Registry. The Registry is not responsible for the privacy practices of other sites linked to the Registry. The Registry encourages users to read the privacy policies of other websites and entities when they connect to them through the Registry.

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:

  • Name
  • Password
  • 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).

The Registry stores this data in order to reply to your question or to establish and service your member account. Your submitted information is then subject to the terms detailed in this Privacy Policy.

11. Children Under The Age Of Thirteen (13)

The Registry is unable to prevent children under the age of thirteen (13) from visiting the Registry; however, no part of our Registry 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 Registry at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, the Registry will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Registry 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 Registry learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, the Registry will take the appropriate steps to delete such information.

12. Notification of Changes

You should review the Privacy Policy whenever you use the Registry in order to be aware of the ways that your information is used. The Registry reserves the right to change the Privacy Policy at any time, without prior notice.