The Hemophilia Joint Health Score Toolkit the “HJHS”

The Hemophilia Joint Health Score Toolkit

the “HJHS”

 

TERMS AND CONDITIONS OF USE FOR ACADEMIA AND NOT-FOR-PROFIT

The HJHS and website: The Hemophilia Joint Health Score (HJHS) is a validated tool for the assessment of the index joints (ankles, knees and elbows) in persons ages 4-18 years with inherited bleeding disorders eg hemophilia. The assessment tool was developed and tested by current and former members of the Physical Health and Joint Function Expert Working Group of the International Prophylaxis Study Group (the IPSG). The HJHS Toolkit comprises the scoring instructions and worksheets, an Information Manual and an Education video. The material is available in several languages.

 

THESE TERMS AND CONDITIONS OF USE ARE IN RESPECT OF THE HJHS AND WEBSITE. IT IS IMPORTANT THAT YOU READ ALL OF THESE TERMS AND CONDITIONS CAREFULLY. IF ACCEPTABLE TO YOU, PLEASE CLICK THE ACCEPT BUTTON. YOU ACKNOWLEDGE AND AGREE THAT BY CLICKING ACCEPT, YOU ARE ENTERING INTO AN AGREEMENT AND YOU AGREE TO BE LEGALLY BOUND BY THE TERMS AND CONDITIONS HEREIN AND YOU AUTHORIZE and CONSENT TO THE COLLECTION AND STORAGE OF YOUR PERSONAL INFORMATION IN ACCORDANCE WITH THIS AGREEMENT. IF ANY OF THESE TERMS AND CONDITIONS ARE NOT ACCEPTABLE TO YOU PLEASE DO NOT CLICK ACCEPT OR USE THE HJHS OR THE WEBSITE.

Upon execution of this License & Terms and Conditions by the User, The Hospital for Sick Children ( “SickKids”) shall provide the User with access to the HJHS and website. The following Terms of and Conditions of use shall apply:

    1. SickKids and other developers of the HJHS and the website maintains all rights, title, and interest in and to all patentable, copyrightable, or otherwise protectable works and inventions associated with the HJHS and the website worldwide.

    2. Acceptance of these Terms and Conditions by you (the “User”) grants the User a restricted, non-exclusive, royalty-free license for the purpose of permitting the User to use the HJHS for clinical use, and academic research initiated by the investigator. SickKids may terminate the license at any time upon notice to User. Upon termination of the study or at the written request of SickKids, User shall cease use of the HJHS and destroy all hardcopies and softcopies of the HJHS in its/his/her possession, unless continued used of the HJHS is permitted in a separate licensing agreement.

    3. The license to use the HJHS is provided to the User free of charge on the understanding that the clinical and/or academic research use is not led by industry. The User agrees to contact ipc.requests[at]sickkids[dot]ca if the HJHS and web-site are to be used in any project funded by industry, and shall direct any commercial or for-profit entity interested in licensing the HJHS to the email provided.

    4. The HJHS Help desk is accessible for general HJHS inquiries, and queries related to the administration or scoring of the tool. If the User requires additional training or support, the User shall submit a written request to SickKids for consideration. A separate agreement outlining the terms of the request will be negotiated between SickKids and the User.

    5. The User agrees to be responsible for the use of the HJHS and the website, pursuant to these Terms and Conditions, by itself, or if applicable, any investigators or medical staff, and assumes full responsibility, including any liability, for any act or omission on the part of any such persons that results in non-compliance with any of these Terms and Conditions.

    6. The User shall not make any other use of the HJHS or the website except as provided for herein. The User shall not modify, transfer, distribute, or release the HJHS or the website to any third party unless otherwise permitted in a separate agreement. The User shall have no rights in the HJHS or the website other than as provided herein. All modifications, alterations or amendments to the HJHS and Website are prohibited unless outlined in a separate agreement with SickKids. Any material developed through this work shall remain the sole property of SickKids and the developers of the HJHS.

    7. The User shall ensure that any permitted derivative versions of the HJHS under these terms and conditions shall maintain the copyright notice in the following form: “Hemophilia Joint Health Score 2.1, © The Hospital for Sick Children, Centre Hospitalier Universitaire Sainte Justine, the Regents of the University of Colorado, Karolinska Hospital, University Medical Center Utrecht, 2009. Used under license by The Hospital for Sick Children. ”

    8. The User shall not sub-license or assign any rights under these Terms and Conditions of use to any third party without receiving written permission from SickKids, except that the User may assign, with notice to SickKids, its rights or obligations under these Terms and Conditions to any affiliate or to any person or entity which acquires all or substantially all of the User’s assets or business to which these Terms and Conditions pertain.

    9. THE USER UNDERSTANDS AND AGREES THAT THE HJHS AND THE WEBSITE MAY NOT BE DISTRIBUTED TO OR SHARED WITH ANY THIRD PARTY, FOR ANY PURPOSE, NOR SHALL IT BE USED AS THE BASIS FOR PROVIDING A CONTRACT FOR SERVICE TO ANY ENTITY.

    10. THE USER REPRESENTS AND WARRANTS IT/HE/SHE IS, OR IS AFFILIATED WITH, AN ACADEMIC INSTITUTION OR NOT-FOR-PROFIT AND IS NOT A COMMERCIAL OR FOR-PROFIT ENTITY OR AFFILIATE WITH OR EMPLOYED BY A COMMERCIAL OR FOR-PROFIT ENTITY. THE USER AGREES THIS IS A MATERIAL TERM OF THIS AGREEMENT AND A BREACH OF THIS SHALL RESULT IN THE IMMEDIATE TERMINATION OF THIS AGREEMENT.

    11. The User accepts that the HJHS and the website are experimental in nature, and that SickKids provides the HJHS and the website “as is”, with no representations or warranties of any kind, express, statutory or implied, as to the operation of the HJHS or the website, or the information, content, materials, or products included with the HJHS and the website. To the fullest extent permissible by law, SickKids and its respective officers, directors, employees, physicians, and contractors disclaim all warranties, express, statutory or implied, including, but not limited to, implied warranties of merchantability, fitness for a particular purpose or non-infringement of third party rights.

    12. In no event shall SickKids be liable for any use of the HJHS or the website by the User, anyone using the HJHS or the website under the User’s supervision or direction, in the event the User is an institution, its investigator(s), or any medical staff; or for any claim which may arise from or in connection herewith. Furthermore, SickKids shall not be liable for any direct, indirect, consequential, or other damages suffered by the User or any third party resulting from the use of the HJHS or the website or the use of any data collected using the HJHS or the website.

    13. The User shall have no right to use the names The Hospital for Sick Children, SickKids, Hemophilia Joint Health Score Toolkit, HJHS except as is incidental to the purposes hereof. Except as otherwise provided herein or required by law, the User shall not use the name of The Hospital for Sick Children, SickKids, Hemophilia Joint Health Score Toolkit, or HJHS, nor shall User use these names in any publication, news release, promotion, advertisement, or other public announcement, whether written or oral, without the prior written approval of SickKids, which approval shall not be unreasonably withheld or delayed.

    14. The User hereby authorizes and consents to the developers of the HJHS and designated administrators for the HJHS at The Hospital for Sick Children (SickKids), to collect and store User’s personal information, and to contact the User or the User’s designated representative regarding the status of the User’s registration and/or relevant event information. SickKids does not sell, trade, or rent the User’s personal information and will not disclosure this information to any third party.



 

    1. Nothing in this Agreement confers by estoppel, implication or otherwise, any license or right under any patents owned by SickKids regardless of whether such patents are related to the HJHS and the website.

    2. These Terms and Conditions, if and when accepted by the User, constitute the entire agreement between the parties relating to the license for the clinical and academic research use of the HJHS and the website.

    3. All disputes arising under this Agreement will be referred to the courts of the Province of Ontario, which will have jurisdiction, and each party irrevocably submits to the jurisdiction of such courts.

    4. The User understands that the information provided by the HJHS and the website is purely educational and is not intended to replace the advice, diagnosis, or treatment offered by a medical or mental health professional.

    5. THE INFORMATION PROVIDED BY SICKKIDS IS NOT INTENDED NOR IMPLIED TO CONSTITUTE MEDICAL ADVICE, DIAGNOSIS, OR TREATMENT. ALWAYS VISIT OR SPEAK TO A QUALIFIED HEALTH SERVICE PROVIDER IN PERSON PRIOR TO STARTING ANY NEW TREATMENT OR WITH ANY QUESTIONS YOU MAY HAVE REGARDING A MEDICAL CONDITION.

    6. SICKKIDS ASSUMES NO LIABILITY FOR ANY DIAGNOSIS, TREATMENT, DECISION MADE, OR ACTION TAKEN IN RELIANCE UPON INFORMATION PROVIDED BY THE HJHS OR THE WEBSITE OR ANY INTERNET SITES LINKED TO IT IN ANY WAY. SICKKIDS DOES NOT ASSUME ANY RESPONSIBILITY OR RISK FOR YOUR USE OF THE HJHS AND THE WEBSITE.