The Hemophilia Joint Health Score Toolkit the “HJHS”

The Hemophilia Joint Health Score Toolkit

 

 

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

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, an Education video and a website. The materials in the HJHS Toolkit are available in several languages.

 

THESE TERMS AND CONDITIONS OF USE GOVERN THE ACCESS AND USE OF THE HJHS TOOLKIT. IT IS IMPORTANT THAT YOU READ THESE TERMS AND CONDITIONS CAREFULLY. IF ACCEPTABLE TO YOU, PLEASE CLICK THE ACCEPT BUTTON. YOU ACKNOWLEDGE AND AGREE THAT BY CLICKING ACCEPT, YOU AND YOUR INSTITUTION 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 FOR THE PURPOSES OF THIS AGREEMENT. IF ANY OF THESE TERMS AND CONDITIONS ARE NOT ACCEPTABLE TO YOU PLEASE DO NOT CLICK ACCEPT.

 

A copy of the HJHS Toolkit shall only be provided to you once you have clicked accept. 

 

Acceptance of these Terms and Conditions by a signatory with the authority to bind you and your institution (you and your institution are collectively the “User”) grants the User a restricted, non-exclusive, royalty-free license for the purpose of using the HJHS Toolkit for clinical use at the institution, and non-commercial investigator initiated academic research the User undertakes (“Purpose”). User shall not reproduce the HJHS Toolkit in part or in whole, except as required for the Purpose. 

 

All data, results and reports obtained by, or prepared in connection with, the authorized use of the HJHS Toolkit shall remain the User's property. User agrees that data, results and reports shall not be used or shared for the purposes of research funded in whole or in part by a for-profit entity or for a commercial purpose, without the prior written consent of SickKids and such use shall be subject to a royalty fee payable to SickKids. 

 

SickKids and other developers of the HJHS Toolkit maintains all rights, title, and interest in and to all patentable, copyrightable, or otherwise protectable works and inventions associated with the HJHS Toolkit and any modification or derivatives made thereto by User. 

 

SickKids may terminate the license at any time upon notice to User. Upon termination, User shall cease use of the HJHS Toolkit and destroy all copies the HJHS Toolkit in its/his/her possession, unless continued used of the HJHS Toolkit is permitted in a separate licensing agreement.

 

The license to use the HJHS is provided to the User free of charge on the understanding that the clinical and/or research use is not funded in whole or in part by a for-profit organization and data, results, reports generated from the use of the HJHS Toolkit will not be used directly or indirectly for any purpose, research or otherwise, involving a for-profit entity. The User agrees to contact ipc.requests[at]sickkids[dot]ca if the HJHS Toolkit if it wishes to use the HJHS Toolkit for any project involving a for-profit entity, if it wishes to provide contract services using the HJHS Toolkit, if it becomes aware that a for-profit entity is interested in licensing the HJHS Toolkit, or if any data, results, or reports generated by the User are shared with a for-profit entity for any reason.

 

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 under reasonable commercial terms.

 

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

 

The User shall not modify, create derivative works of, transfer, distribute, or release the HJHS Toolkit. 

 

The User shall ensure that HJHS Toolkit and all materials contained therein 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.”

 

The User shall not sub-license or assign any rights under these Terms and Conditions of use to any third party without first 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.

 

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.

 

The User accepts that the HJHS Toolkit is experimental in nature, and that SickKids provides the HJHS Toolkit “as is”, with no representations or warranties of any kind, express, statutory or implied, as to the operation of the HJHS Toolkit, or the information, content, materials, or products included with the HJHS Toolkit. To the fullest extent permissible by law, SickKids, the developers of the HJHS Toolkit, and its/their 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.

 

In no event shall SickKids or any HJHS Toolkit developers be liable for any use of the HJHS Toolkit, any data, results or reports generated by the User, anyone using the HJHS Toolkit 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 and HJHS Toolkit developers 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 Toolkit or any data, results, or reports generated or collected using the HJHS Toolkit.

 

The User shall have no right to use the names The Hospital for Sick Children, SickKids, Hemophilia Joint Health Score Toolkit, or 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, 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.

 

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 disclose this information to any third party.

 

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 Toolkit.

 

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 non-commercial investigator initiated academic research use of the HJHS Toolkit.

 

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

 

SICKKIDS ASSUMES NO LIABILITY FOR ANY DIAGNOSIS, TREATMENT, DECISION MADE, OR ACTION TAKEN IN RELIANCE UPON INFORMATION PROVIDED BY THE HJHS TOOLKIT OR ANY INTERNET SITES LINKED TO IT IN ANY WAY. SICKKIDS 

 

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.