Sarcomeric Human Cardiomyopathies Registry (SHaRe)
Terms and Conditions
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 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 MyKardia 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 HCM and DCM research community at large.
Our goal is to create an interactive online community where affected individuals can share experiences with others who know what they 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.
These Terms and Conditions include a release by you of all claims for damage against us that may arise out of your use of this Site. By using this site, you agree to this release.
RULES FOR USER CONDUCT AND USE OF THE SERVICE
SHaRe’ Service allows you to email comments, stories and feedback (collectively “User Content”). You are solely responsible for the User Content that you share or otherwise make available (hereinafter, “post”) on the Service, and you agree that we are only acting as a passive conduit for your online distribution and publication of your content.
Your permission to use SHaRe is conditioned upon the Use Restrictions and the Conduct Restrictions.
USE RESTRICTIONS. You agree that you will not under any circumstances:
· post any information that is abusive, threatening, obscene, defamatory, libelous, or racially, sexually, religiously, or otherwise objectionable and offensive;
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· make any automated use of the system, or take any action that we deem to impose or to potentially impose an unreasonable or disproportionately large load on our servers or network infrastructure;
· bypass any robot exclusion headers or other measures we take to restrict access to the Service or use any software, technology, or device to scrape, spider, or crawl the Service or harvest or manipulate data;
· will not use the communication systems provided by or contacts made on SHaRe for any commercial solicitation purposes;
· will not publish or link to malicious content intended to damage or disrupt another user’s browser or computer;
POSTING AND CONDUCT RESTRICTIONS. The following rules pertain to content, defined as any communications, images, and all the material, data, and information that you send through the SHaRe Service, or that other users transmit, including without limitation any comments. By transmitting and submitting any User Content while using our Service, you agree, represent and warrant as follows:
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· You hereby affirm we have the right to determine whether any of your Content submissions are appropriate and comply with these Terms of Service and remove any and/or all of your submissions.
SHaRe takes no responsibility and assumes no liability for any User Content that you or any other user or third party posts or sends over the Service. You understand and agree that any loss or damage that occurs as a result of the use of any User Content that you make available or access through your use of SHaRe’s Service is solely your responsibility. SHaRe is not responsible for any public display or misuse of your User Content.
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LINKS TO OTHER SITES AND/OR MATERIALS
As part of our service, we provide you with convenient links to third party website(s), as a courtesy to our Site visitors. SHaRe has no control over linked websites or the services, promotions, materials, information or goods available on these third party websites. SHaRe is not responsible for and does not endorse or warrant any advice, materials, information, goods or services available through any linked websites or any privacy or other practices of such websites. SHaRe may terminate any link at any time.
NATURE OF OUR SERVICE / NOT TO BE USED FOR MEDICAL ADVICE
• Though we endeavor to make the information on our site accurate, up-to-date, and complete, SHaRe and myokardia.com (our “Sites”), including the “Q & A” and other interactive portions of our site, are provided as a free public service for general information only, and should never be relied upon for specific medical advice.
• Any information published, accessed, or viewed at the Sites is intended for general educational purposes only and should never substitute for individualized professional advice from a physician or other health care provider, or as a recommendation for any particular treatment or plan.
• Nothing on our Sites constitutes the establishment of a physician-patient relationship between you and any doctor participating in our Sites, or between you and MyoKardia, Inc.
• No information provided by Our Sites is intended to diagnose, treat, or cure any patient, or to otherwise be used or considered as medical advice, a medical opinion, or the practice of medicine.
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• Never disregard medical advice or delay seeking it because of something you may have read on our Sites!
• Health information changes quickly. Therefore, it is always best to confirm information with your health care professional.
EMAIL MAY NOT BE USED TO PROVIDE NOTICE TO SHaRe
Communications made through the Site’s e-mail and messaging system will not constitute legal notice to SHaRe or any of its officers, employees, agents or representatives in any situation where notice to SHaRe is required by contract or any law or regulation.
USER CONSENT TO RECEIVE COMMUNICATIONS IN ELECTRONIC FORM
For contractual purposes, you (a) consent to receive communications from SHaRe in an electronic form; and (b) agree that all terms and conditions, agreements, notices, disclosures, and other communications that SHaRe provides to you electronically satisfy any legal requirement that such communications would satisfy if it were in writing. The foregoing does not affect your non-waivable rights.
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MODIFICATION OF TERMS AND CONDITIONS
We can amend these Terms and Conditions at any time and will update these Terms and Conditions in the event of any such amendments, it is your sole responsibility to check the Site from time to time to view any such changes in the Agreement. If you continue to use the Site, you signify your agreement to our revisions to these Terms and Conditions. However, we will notify you of material chances to the terms by posting a notice on our homepage and/or sending an email to the email address you provided to us upon registration. For this additional reason, you should keep your contact and profile information current.
APPLICABLE LAWS; VENUE
These Terms and Conditions and your use of the Site are governed by the federal laws of the United States of America and the laws of the State of Delaware. Any action related to this Site will be filed only in the appropriate state or federal court located within the State of Delware. By using this Site, you signify your consent to the jurisdiction of the state and/or federal courts of the State of Delaware.
SUGGESTIONS AND FEEDBACK
SHaRe welcomes your feedback and inquiries. If you have any comments or questions, please contact us by sending an email to Share@myokardia.com.