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.
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
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
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.
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 email@example.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.
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 firstname.lastname@example.org.
Last updated May 1, 2014