SHaRe Cardiomyopathy Registry Privacy Policy

About the Sarcomeric Human Cardiomyopathies Registry (SHaRe)

The Sarcomeric Human Cardiomyopathies Registry (SHaRe) works to advance our understanding of Hypertrophic Cardiomyopathy (HCM) and Dilated Cardiomyopathy (DCM). SHaRe is a collaboration among the Brigham and Women’s Hospital, University of Michigan, Stanford University, University College, Boston Children’s Hospital, Florence Centre for Cardiomyopathies and Erasmus University Medical Center, financially supported by research grants from MyoKardia Inc. SHaRe brings together a group of experienced and knowledgeable cardiologists and geneticists from the United States and Europe with a passion for helping people with heritable heart disease. Through SHaRe, these investigators contribute patients’ and families’ anonymized (de-identified) clinical and laboratory data to a registry with the goal of revolutionizing the treatment of genetic cardiomyopathies and related heart diseases through collaborative research.

 

            SHaRe’s public information website provides a place where heart disease patients and their families can access resources and information related to HCM and DCM, learn about the research activities of the investigators and new developments across the cardiomyopathy research community at large. It provides a place where they can share their own stories, including photos if they wish, and read about the experiences of others with cardiomyopathies. Our goal is to create an interactive online community where affected individuals can share experiences with others, who know what you are going through, and learn from and inspire each other. To submit a photo or personal story, simply provide your name and email address on our site and a member of our team will contact you regarding posting your photo and/or story on our website.

SHaRe cares about online privacy. If you have any questions concerning this privacy policy, please send a private email to us at share@myokardia.com.


Collection of Information From or About Site Visitors or their Devices

On its own behalf and on behalf of SHaRe, Myokardia collects information from or about visitors to the site and/or their devices:

·         Personal information you actively submit via forms on the SHaRe website, such as your name and email address  

·         Biographical information you voluntarily provide such as a profile photograph, city and state of residence, gender or age, and general notes (NOTE:  Please be aware that information you voluntarily share about yourself will be visible on the worldwide web.  You should therefore be very careful and aware, and never post contact or other information you do not wish to be visible to visitor to this public website.)

·         Condition or disease information such as diagnosis, date of diagnosis, outcomes, or symptoms you voluntarily provide in Comments or free text fields through the interactive features of the SHaRe website

·         Individual or aggregate responses to surveys (as initiated from time to time)

·         Information collected passively from or about your device (i.e., the computer or mobile device you use to access the website), such as browser type, the IP address or device ID accessing the website, and information about your utilization of our Site

Information Use

We use your information to authenticate users, to contact users regarding the submission of their photos and stories, and to send email communications or other updates to users on news or other developments of potential interest regarding HCM, DCM, and SHaRe, events, expert answers, clinical trials, and other information.  We use data collected passively from or about your device for site security and integrity purposes, and also to manage the website, track usage, and improve the website service and functionality.

Functional and Performance Cookies

We use cookies to make our website work, and also collect information about how visitors use the website, for instance which pages visitors go to most often, and if they get error messages from web pages. These cookies don’t collect information that identifies a visitor. All information these cookies collect is aggregated and therefore anonymous. It is only used to improve how the website works.

Information Sharing

Except at your explicit direction (such as by setting up a personal public profile or explicitly asking us to pass your information along to a medical professional), SHaRe and Myokardia will not disclose the contact information you submit with third parties. 

Myokardia and SHaRe may also share information collected from or about site visitors when they in their reasonable discretion believe that disclosure is necessary: (1) to conform to legal requirements or to respond to a subpoena, search warrant or other legal process received by SHaRe, whether or not a response is required by applicable law; (2) to enforce the SHaRe Terms of Use Agreement or to protect their rights; or (3) to protect the safety of members of the public and users of the service.


Links
SHaRe contains links to sites, including its sponsor MyoKardia, Inc. and the creator of its registry, Boston Advanced Analytics, Inc. SHaRe is not responsible for the privacy policies and/or practices on other sites. When linking to another site a user should read the privacy policy stated on that site. Our privacy policy only governs information collected on the SHaRe website, operated by Myokardia.
 

Your Choices

Users who enrolled in our email updates can opt out of receiving further updates on events by clicking the “unsubscribe” link at the bottom of any such email.    Users who filled out our “Get Answers” form or who are enrolled in our “Patient & Family Stories” page can also opt out of promotional emails by emailing us at share@myokardia.com.   Finally, users can also update their information and unsubscribe to future emails by filling out the form on the Contact page and checking the “Update my Info” box.


Changes in Our Privacy Policy
From time to time we may make changes to our privacy policy. If we make changes, we will post them on our site to make users aware of what the changes are so users will always be aware of what information we collect, how we use it, and when we may disclose it. A user is bound by any minor changes to the policy when she or he uses the site after those changes have been posted. If, however, we are going to use users’ personally identifiable information in a manner materially different from that stated at the time of collection, we will notify by posting a notice on our Web site for 30 days.

Site Security

SHaRE and Myokardia take commercially reasonable measures to secure data collected from or about site visitors or their devices from unauthorized access or disclosure, but cannot guarantee the confidentiality, integrity, or availability of data collected or displayed on the site. 


Contacting the Web Site
If you have any questions about this privacy statement, the practices of this site, or your dealings with this Web site, please contact us at share@myokardia.com.

Last updated May 1, 2014