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.

PRIVACY POLICY

            SHaRe respects the privacy of its Site users. Please refer to SHaRe’s Privacy Policy which explains how we collect, use, and disclose information that pertains to your privacy. When you access or use the Site, you signify your agreement to this Privacy Policy.

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;

·       use the service for any unlawful purpose or for the promotion of illegal activities;

·       attempt to, or harass, abuse or harm another person or group;

·       provide false or inaccurate information;

·       interfere or attempt to interfere with the proper functioning of SHaRe’ Service;

·       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:

·       You will not submit information that is false or inaccurate;

·       You will not submit content that is copyrighted or subject to third party proprietary rights, including privacy, publicity, trade secret, etc., unless you are the owner of such rights or have the appropriate permission from their rightful owner to specifically submit such content to SHaRe; and

·       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. 

LICENSE GRANT

By posting any User Content on SHaRe, you expressly grant, and you represent and warrant that you have a right to grant, to SHaRe a royalty-free, sublicensable, transferable, perpetual, irrevocable, non-exclusive, worldwide license to use, reproduce, modify, publish, list information regarding, edit, translate, distribute, publicly perform, publicly display, and make derivative works of all such User Content and your name, voice, and/or likeness as contained in your User Content, in whole or in part, and in any form, media or technology, whether now known or hereafter developed, for use in connection with SHaRe’s Services.

INTELLECTUAL PROPERTY

            You acknowledge and agree that we and our licensors retain ownership of all intellectual property rights of any kind related to the Site, including applicable copyrights, trademarks and other proprietary rights. Other product and company names that are mentioned on the Site may be trademarks of their respective owners. We reserve all rights that are not expressly granted to you in this Agreement.

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.

•           Always consult your personal physician or other professional health care provider when seeking individualized treatment regarding your medical diagnosis or condition.

•           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.

DISCLAIMER; LIMITATION OF DAMAGES; RELEASE

THE SITE IS PROVIDED “AS IS” WITHOUT WARRANTY OF ANY KIND, EXPRESS OR IMPLIED, INCLUDING ANY WARRANTY OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, TITLE, SECURITY, ACCURACY AND NON-INFRINGEMENT. WITHOUT LIMITING THE FOREGOING, SHaRe MAKES NO WARRANTY OR REPRESENTATION THAT ACCESS TO OR OPERATION OF THE SITE WILL BE UNINTERRUPTED OR ERROR FREE. YOU ASSUME FULL RESPONSIBILITY AND RISK OF LOSS RESULTING FROM YOUR DOWNLOADING AND/OR USE OF FILES, INFORMATION, CONTENT OR OTHER MATERIAL OBTAINED FROM THE SITE.

TO THE EXTENT PERMITTED BY LAW, IN NO EVENT SHALL SHaRe, ITS AFFILIATES, DIRECTORS, EMPLOYEES OR ITS LICENSORS OR PARTNERS BE LIABLE FOR ANY DIRECT, INDIRECT, PUNITIVE, INCIDENTAL, SPECIAL, CONSEQUENTIAL OR EXEMPLARY DAMAGES, INCLUDING WITHOUT LIMITATION DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES, THAT RESULT FROM (A) THE USE, DISCLOSURE, OR DISPLAY OF YOUR INFORMATION OR CONTENT; (B) YOUR USE OR INABILITY TO USE THE SERVICE; (C) THE SERVICE GENERALLY OR THE SOFTWARE OR SYSTEMS THAT MAKE THE SHaRe SERVICES AVAILABLE; OR (D) ANY OTHER INTERACTIONS WITH SHaRe OR ANY OTHER USER OF THE SHaRe SERVICES, WHETHER BASED ON WARRANTY, CONTRACT, TORT (INCLUDING NEGLIGENCE) OR ANY OTHER LEGAL THEORY, WHETHER OR NOT SHaRe HAS BEEN INFORMED OF THE POSSIBILITY OF SUCH DAMAGE, AND EVEN IF A REMEDY SET FORTH HEREIN IS FOUND TO HAVE FAILED OF ITS ESSENTIAL PURPOSE.

If you have a dispute with one or more users, you release us (and our officers, directors, agents, subsidiaries, joint ventures and employees) from claims, demands and damages (actual and consequential) of every kind and nature, known and unknown, arising out of or in any way connected with such disputes.  If you are a California resident, you waive California Civil Code §1542, which says: "A general release does not extend to claims which the creditor does not know or suspect to exist in his favor at the time of executing the release, which if known by him must have materially affected his settlement with the debtor."

INDEMNITY

            You agree to defend, indemnify and hold harmless SHaRe, myokardia.com, their owners, affiliates, parent company, officers, directors, employees and agents, from and against any and all claims, damages, obligations, losses, liabilities, costs or debt, and expenses (including but not limited to reasonable attorney's fees) arising from: (i) your use of and access to SHaRe; (ii) your violation of any term of these Terms and Conditions; (iii) your violation of any third party right, including without limitation any copyright, property, or privacy right; or (iv) any claim that any Content submitted by you causes damage to a third party. This defense and indemnification obligation will survive these Terms and Conditions and your use of SHaRe.

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.

ASSIGNMENT

SHaRe may assign or delegate these Terms and Conditions and/or the SHaRe Privacy Policy, in whole or in part, to any person or entity at any time with or without your consent. You may not assign or delegate any rights or obligations under the Terms and Conditions or Privacy Policy without SHaRe’ prior written consent, and any unauthorized assignment and delegation by you is ineffective.

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.