Please read this Congenital Muscle Disease International Registry (CMDIR) “Privacy Policy” and the “Terms and Conditions” prior to using any portion of this website (“CMDIR”). By using the CMDIR, the user agrees to all the terms of the Privacy Policy. If the user does not agree with the terms of this Privacy Policy, they may not use any portion of the CMDIR.
The CMDIR is owned and operated by Cure CMD, Inc., a U.S. registered 501(c)3 nonprofit organization, and is co-funded by our advocacy partners. The CMDIR is hosted and managed by Ordinal Data, Inc.. The CMDIR is overseen by Aspire Institutional Review Board (Aspire IRB), an independent organization responsible for ensuring the ethical conduct of researchers and execution of studies and registries.
The CMDIR has written this Privacy Policy to make users are aware of the information collected, how that information is protected, and how it is used. If users have any questions or comments regarding the Privacy Policy, or feel that the CMDIR is not abiding by its posted Privacy Policy, please contact us via email at info@cmdir.org or via registered mail at:
| Cure CMD/CMDIR |
| 3217 East Carson Street #1014 |
| Lakewood, CA 90712 USA |
Users may also contact Aspire IRB if:
- You have questions, concerns, or complaints that are not being answered by the research team,
- You are not getting answers from the research team,
- You cannot reach the research team,
- You want to talk to someone else about the research,
- You have questions about your rights as a research subject.
Users may contact Aspire IRB at:
- Telephone: 1-877-366-5414 (toll-free)
- Email: email@aspire-irb.com
General
The CMDIR has the highest regard for your privacy. We realize that our service can only work if we build trust with our user communities. For that reason, our first priority is to make sure that users are confident in the security of the data they share with us. The Privacy Policy outlines the type of information the CMDIR collects from the users, 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 this page. We encourage users to review the Privacy Policy periodically for any updates or changes.
Collection of Information
All of the information users provide to the CMDIR will be maintained in a commercial-grade, cloud-based, HIPAA compliant, encrypted data center managed by Ordinal Data, Inc., and any information that could identify a user will not be shared without their express consent.
Use and Disclosure of Information
The goal of the CMDIR is to make the information provided by users searchable and useable by the research community, while still protecting their identity. De-identified data (information where all personal identification has been removed) gathered from a user's profile will be made available to all registrants, administrators and affiliates of the CMDIR to support analyses, breakthroughs and clinical trial recruitment that may lead to better treatments and care management. The CMDIR will perform inquiries for specific questions within the registry and provide graphic summaries to registrants and the research community. Some de-identified information will also be shared with databases focusing on a broader range of neuromuscular diseases. By creating a profile in the CMDIR, a subset of de-identified information collected may be shared with international databases in order to develop a broader global understanding of congeneital muscle disorders for clinical trials and treatments.
Users may also be given the opportunity to opt into sharing specifically outlined, identifable information from their CMDIR profile with researchers working under an IRB-approved protocol. Sharing data is not required, and users may choose to opt out of specific data sharing at any time.
Note: Any data that has already been authorized and shared with a third party, or has been shared in a scientific publication may not be retrievable.
Any information users provide to third party clinicians or professionals with whom they have elected to contact through the CMDIR will be subject to their policies with respect to privacy and nondisclosure of information. We encourage uers to familiarize themselves with those policies.
The CMDIR may employ independent contractors, vendors and suppliers ("Outside Contractors") to provide specific services and products related to the CMDIR, including but not limited to, performing 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 CMDIR and the services provided. These Outside Contractors may have limited access to information collected in the CMDIR, including personally identifiable information, in the course of providing such products or services. Outside Contractors will be required to conform to this privacy policy and HIPAA standards, maintaining confidentiality and appropriate security in downloading, storing and using data from the CMDIR.
Withdrawal of Information
At any time, and for any reason, users may withdraw from the registry by clicking the “Withdraw” button on their CMDIR dashboard.
Note: Any data that has already been authorized and shared with a third party, or has been shared in a scientific publication may not be retrievable.
Protection of User Information
All users are required to review and abide by the Terms and Conditions and the Privacy Policy. The CMDIR uses commercially reasonable methods to protect the security of information and data submitted. The CMDIR employs best practices from our networking to our secure servers to protect user's data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Wherever passwords, ID numbers, or other special access features are used on the CMDIR, users should take special care to safeguard them.
Ownership of Information
All information provided to the CMDIR is managed by Cure CMD and Ordinal Data, Inc. Users always retain ownership of their data and have the right to withdrawal from the registry at any time, for any reason.
Cookies
The CMDIR, does not use cookies to track usage or to identify a user's computer or browser. The CMDIR does anonymously track site navigation to identify the parts of the website that are of greater or lesser interest, so that we can adjust the information provided accordingly.
Log Files and Web Beacons
The CMDIR may use log file information that records information sent by a user's web browser, which may include information such as the user's web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information, to analyze trends and track the movement of users anonymously. IP addresses are not linked to personally identifiable information.
The CMDIR may also employ “web beacons” (also known as clear gifs) to track online 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 sent to users.
Website Links
The CMDIR contains links to other websites. The Privacy Policy applies solely to information collected on or submitted to the CMDIR. The CMDIR is not responsible for the privacy practices of other sites linked on this website. The CMDIR encourages users to read the privacy policies of linked websites when they connect to them through this website.
Communications From the CMDIR
From time to time, the CMDIR will notify users of updates and other valuable information about the CMDIR and related clinical and research information. By using the CMDIR, or registering or subscribing for services provided on or through this website, users consent to being contacted by the CMDIR and related entities, and to receiving such updates and information.
The CMDIR encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the CMDIR cannot control, and assumes no responsibility for, any contact of users by related entities, including its advocacy partners.
Required Disclosures
The CMDIR reserves the right to disclose a user's 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 CMDIR, Cure CMD, or Ordinal Data, Inc.; (ii) protect and defend the rights of the CMDIR, Cure CMD, or Ordinal Data, Inc., and (iii) act under exigent circumstances to protect the personal safety of users or the public.
Contact Us, Member Accounts
If a user elects to contact the CMDIR through a webform or contact information provided on this 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, and certain profile and account information. The CMDIR stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then owned by the CMDIR and is subject to the terms detailed in the Privacy Policy.
Children Under The Age Of Thirteen (13)
The CMDIR is unable to prevent children under the age of thirteen (13) from visiting this 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 this website at any time or in any manner. In order to comply with the U.S. Children's Online Privacy Protection Rule ("COPPA"), the CMDIR will not knowingly collect personally identifiable information provided by a child under the age of thirteen (13). By providing personally identifiable information through the CMDIR, including but not limited to, name and e-mail address, the user represents and warrants that they are at least thirteen (13) years of age and that they agree to comply with the Privacy Policy. If, at any time, Cure CMD learns that personally identifiable information has been provided by persons under the age of thirteen (13) without verified parental consent, the CMDIR will take the appropriate steps to remove such information from this website.
Notification Of Changes
Users should review the Privacy Policy whenever they use the CMDIR in order to be aware of the ways in which provided information is used. The CMDIR reserves the right to change the Privacy Policy at any time, without prior notice.