The Rare Disease Clinical Activity Protocol Program or “RareCAP” Platform (the “Platform”), which was established through a collaboration between Vanderbilt University Medical Center (“VUMC”, “We”, “Us”, or “Our”) and Children’s National Hospital and its affiliates (collectively, “Children’s National Hospital”), is intended to facilitate the dissemination of scenario-based rare disease protocols derived through clinician crowdsourcing so that relevant treatment information can be readily available to treating clinicians such as specialists and the front-line caregivers. However, the Platform is only a single point of information, and it is not intended to be a substitute for the independent professional judgment of a properly qualified and licensed clinician.

The Platform (which includes any protocols, content or other information available through the Platform) is subject to these Terms of Use (“Terms”). By registering to access the Platform, clicking “I agree” below, or otherwise accessing or using Platform, you (“You”) agree to be bound by these Terms and Our privacy policy. If you are accessing the Platform as an employee or otherwise for an organization, the term “You” as used in these Terms includes the organization and You represent that You are authorized to agree to these Terms on behalf of that organization. These Terms constitute a legally binding agreement between You and Us. If You do not agree to these Terms and our privacy policy, You may not use or access the Platform or any element thereof.

THE PLATFORM IS NOT TO BE USED FOR EMERGENCIES OR FOR MEDICAL OR PROFESSIONAL ADVICE. IN THE EVENT OF A MEDICAL EMERGENCY, CALL 911 IMMEDIATELY. Information available through the Platform is not a substitute for a doctor’s medical judgment or advice. Patients are encouraged to discuss specific, individual health concerns with an appropriate healthcare professional.

1. Scope of Use. Subject to these Terms, You are granted a limited, revocable, non-transferable and non-exclusive permission to access and use the Platform (which includes the content and other information offered on or through the Platform) for Your own educational and informational purposes only; provided, however, that You are solely responsible for any use or application of the Platform. You acknowledge that following any protocol or any guidelines available through the Platform will not ensure successful treatment or outcome, and You agree that such protocols and guidelines should not be interpreted as setting a standard of care or be deemed inclusive of all proper methods of care nor exclusive of other methods of care. The ultimate judgment regarding the propriety of any specific therapy must be made by a properly qualified and licensed professional care provider and the patient considering all relevant facts and circumstances, and the known variability and biological behavior of the applicable disease. Use of the Platform is only for Your use and no other person’s use; You may not allow any other person to use, or pose as You in connection with, the Platform. You may not copy, share or distribute any content obtained through the Platform, except that you may download one printed copy of such content for Your own educational and informational use consistent with these Terms provided that you retain all copyright and other proprietary notices on such copy.
2. Account Credentials. Upon registering to access the Platform, You will develop a unique username and password. You are solely responsible for maintaining the confidentiality of Your username and password, and for all activities that occur under Your username and password. You agree to prohibit anyone else from using your username and password and will immediately notify Us of any unauthorized use of your username and password or other security concerns of which You become aware. You agree that We may access, preserve, and disclose your account information, including your username and password, if We believe in good faith that it is necessary to: (i) enforce these Terms, (ii) respond to your requests for customer service, (iii) comply with federal, state, or local laws or legal process, (iv) respond to claims that information you have provided violates the rights of others, or (v) protect the rights, property or personal safety of the operators (including Us), contributors or users of the Platform or functionality and operation of the Platform.
3. Reservation of Rights; Restrictions. The Platform is the confidential and proprietary intellectual property owned by Us, Our licensor(s) (which for purposes of these Terms, includes, without limitation, any contributor of any protocol or other information related to rare diseases intended to be made available through the Platform (a “Contributor”)) and/or Children’s National Hospital, and may not be used or disclosed by You except as expressly authorized in these Terms. Except for the limited rights expressly granted in these Terms, We, Children’s National Hospital, and/or Our licensors, own and retain all right, title and interest in and to the Platform and all derivative works thereof (regardless of by whom prepared), and all related intellectual property and proprietary rights. Furthermore, nothing in these Terms shall be construed to confer any rights by implication, estoppel, or otherwise as to any technology or patent rights or copyrights of Ours, Our licensors, Children’s National Hospital or any other entity, whether existing now or in the future, and whether or not related to the Platform, except for the limited rights expressly set forth in these Terms. You shall not (i) use the Platform for any purpose other than Your educational and informational purposes in accordance with these Terms; (ii) reverse engineer, decompile or disassemble the Platform, or any software or other technology used to deliver or display the Platform, or any portion of it, or attempt to engage in any of such activities; (iii) transmit the Platform or otherwise permit it to be publicly accessible over a network, by any means, including but not limited through the internet or in the operation of a service bureau; (iv) remove, obscure or alter any disclaimers, or notices, including without limitation, copyright notice, trademark or other proprietary rights notices displayed or contained within the Platform; or (v) modify or create any derivative work of the Platform or any part thereof. However, should you create any derivative works based on the Platform despite the foregoing, You hereby agree that such derivative works are owned exclusively by Us and Children’s National Hospital. You hereby assign all right, title, and interest in such derivative works to Us and Children’s National Hospital.You must comply with all applicable laws in connection with the Platform, and You may not access or use the Platform in an unlawful way or for any unlawful purpose or for any purpose other than its intended purpose. You agree not to post or transmit: (a) any information or other content under a false name; (b) any identifiable health information or any other information that is identifiable with any person (other than Your information submitted for the purpose of registering to access, or using, the Platform in accordance with these Terms); or (c) any information or content which (i) is libelous, defamatory, obscene, fraudulent, false, or contrary to the ownership or intellectual property rights of any other person, or (ii) contains any virus, worm, Trojan horse or other code which is contaminating or destructive to the files or programs of the Platform or any of its users. We reserve the right to delete any information provided by You that We deem in Our sole discretion fraudulent, abusive, defamatory, obscene or in violation of a copyright, trademark or other intellectual property or ownership right of any other person, or any other reason determined by Us.
4. Use of Professional Judgment. In making the Platform available, We (and Our licensors) and Children’s National Hospital are not engaged in rendering medical advice, diagnosis or other medical or professional services. The Platform is made available for educational and informational purposes only and not as a substitute for Your, or any other person’s, analysis or judgment. You must exercise independent judgment when using any information contained in the Platform and take sole responsibility for its use. We use reasonable efforts to see that no inaccurate or misleading data, opinion, or statement appear in the Platform, but there is no warranty or guarantee regarding the completeness or accuracy of the Platform. Additionally, standards and practices in medicine change as new information and data become available and the individual medical professional should consult a variety of sources in making clinical decisions for individual patients. We and Children’s National Hospital undertake no duty or obligation to update or revise the Platform. It is the responsibility of the treating physician or healthcare professional, relying on independent experience and knowledge of the patient, to determine the appropriate treatment. Because of the uniqueness of each patient and the need to take into account a number of concurrent considerations, the information contained in the Platform should be used only as general information. The information provided in the Platform is not a substitute for the healthcare provider’s examination/assessment of each patient and consideration of laboratory data and other factors unique to the patient. Accordingly, We, Our licensors, Children’s National Hospital, and our respective employees, officers, and agents accept no liability whatsoever for the consequences of any protocol, data, opinion, or statement available through the Platform, whether or not accurate or complete. You agree to defend, indemnify and hold harmless Us, Children’s National Hospital, and Our licensors, and any respective affiliates, officers, directors, trustees, employees and agents from and against any claims, actions, demands, judgments, liabilities, fines, penalties and expenses, including but not limited to reasonable attorneys’ fees, resulting from or alleged to result from, use of or reliance on the Platform.
5. Contributions. We may give You, in Our discretion, the opportunity to submit a protocol or other similar information related to a rare disease as a potential contribution for publication on the Platform. If You choose to do so, for purposes of these Terms, You will be deemed the Contributor of the information that You submit (“Your Contribution”). As a Contributor, You hereby represent and warrant that you have all rights and consents necessary or desirable to submit Your Contribution for publication through the Platform and subsequent use by Us and third-parties consistent with the purpose of RareCAP, and You hereby grant to Us and Children’s National Hospital a non-exclusive, perpetual, irrevocable, fully-paid, royalty-free right and license (with the right to sublicense) to copy, use, modify (or create derivative works of), display, publish and distribute Your Contribution in furtherance of the purposes of RareCAP or the general advancement of medical knowledge or otherwise.
6. Platform Operations. We reserve complete and sole discretion with respect to the operation of the Platform, and We may, among other things withdraw, suspend, or discontinue any element, functionality or feature of the Platform. We and Children’s National Hospital are not responsible for transmission errors or corruption, or compromise of data carried over local or interchange telecommunication carriers or otherwise. We and Children’s National Hospital are not responsible for maintaining data arising from use of the Platform. We reserve the right to maintain, delete or destroy all communications and materials posted or uploaded to Platform. Although the Platform may include links to third-party internet sites as a convenience, the inclusion of such links does not imply endorsement of any linked site (or any content, products, services or information available through such site). We and Children’s National Hospital do not exert any editorial or other control over such sites. We and Children’s National Hospital undertake no responsibility, and shall have no liability, for the content, products, services or information contained on, or available through, such sites. Nor do We or Children’s National Hospital take responsibility for the privacy policies and practices of such sites. By registering to access the Platform, You agree that We may send you newsletters related to Platform maintenance or new features in the Platform or with messages containing information about breakthroughs in practice or research for specific rare diseases along with information and links to other related websites. These communications are not comprehensive medical text and do not include all potential information regarding the subject matter. These communications are for general educational and informational purposes only and should not be relied upon as a substitute for patient-specific medical diagnosis and treatment or healthcare consultation or construed, directly or indirectly, as the practice of medicine or dispensing of medical services by Us or by Children’s National Hospital or any of Our or their health care providers. Such information is not a substitute for seeing an appropriate healthcare professional for medical treatment. The information contained in these communications may be compiled from a variety of sources, and We and Children’s National Hospital make no warranty as to the content of these materials or the information contained therein.
7. Term and Termination. These Terms shall be effective until terminated as provided herein. Either You or We may terminate access to the Platform at any time for any reason with no obligation or liability of any kind for such termination. Additionally, Your right to access to the Platform will automatically terminate in its entirety if you breach these Terms. Upon termination of Your right to access the Platform, you must immediately cease use of the Platform and destroy or return all copies thereof, except that, if you have not breached these Terms, You may retain one printed copy of educational content obtained through the Platform prior to such termination or expiration for Your personal educational and informational use, which will remain subject to these Terms. Sections 3-12 shall survive expiration or termination of these Terms.
8. Disclaimer. YOU ACKNOWLEDGE THAT YOUR USE OF THE PLATFORM IS AT YOUR SOLE RISK, AND THAT YOU ASSUME FULL RESPONSIBILITY FOR ALL RISK ASSOCIATED THEREWITH. THE PLATFORM IS PROVIDED “AS IS” WITHOUT WARRANTY OF ANY KIND, AND WE DISCLAIM ALL WARRANTIES WHETHER EXPRESS OR IMPLIED, INCLUDING, BUT NOT LIMITED TO, ANY IMPLIED WARRANTY OF MERCHANTABILITY, NON-INFRINGEMENT, FITNESS FOR A PARTICULAR PURPOSE. WITHOUT LIMITING THE FOREGOING, WE, CHILDREN’S NATIONAL HOSPITAL, AND OUR AND THEIR RESPECTIVE AFFILIATES MAKE NO WARRANTY AS TO THE RELIABILITY, ACCURACY, TIMELINESS, USEFULNESS, ADEQUACY, COMPLETENESS OR SUITABILITY OF THE PLATFORM, OR ANY INFORMATION RECEIVED THROUGH THE PLATFORM.
9. Limitation of Liability. IN NO EVENT SHALL WE, OUR LICENSORS OR CHILDREN’S NATIONAL HOSPITAL BE LIABLE FOR ANY DAMAGES, WHETHER DIRECT, INDIRECT, INCIDENTAL, SPECIAL, EXEMPLARY OR CONSEQUENTIAL (INCLUDING, WITHOUT LIMITATION LOSS OF BUSINESS, PROFITS OR REVENUE) HOWEVER CAUSED AND ON ANY THEORY OF LIABILITY, WHETHER IN CONTRACT, STRICT LIABILITY, OR TORT (INCLUDING NEGLIGENCE OR OTHERWISE) ARISING FROM OR RELATED TO THESE TERMS, THE PLATFORM OR ANY CONTENT AVAILABLE THROUGH THE PLATFORM, EVEN IF ADVISED OF THE POSSIBILITY OF SUCH DAMAGE. THE PARTIES AGREE THAT THE DISCLAIMERS AND LIMITATIONS SET FORTH HEREIN ARE AN ESSENTIAL INDUCEMENT TO THE OFFERING OF THE PLATFORM AND SHALL SURVIVE AND APPLY NOTWITHSTANDING THE FAILURE OF ESSENTIAL PURPOSE OF ANY LIMITED REMEDY. TO THE EXTENT ANY OF THE ABOVE LIMITATIONS OF LIABILITY ARE RESTRICTED BY APPLICABLE FEDERAL, STATE OR LOCAL LAW, SUCH LIMITATIONS SHALL NOT APPLY, BUT ONLY TO THE EXTENT OF SUCH RESTRICTIONS. You are solely responsible for determining the appropriateness of using the Platform and you assume all risks and responsibility associated with use of the Platform.
10. Indemnification. You shall defend, indemnify and hold harmless VUMC, Our licensors, Children’s National Hospital, and their affiliates, and each of their directors, officers, employees, agents, successors and assigns (collectively, the “Indemnified Parties”) from and against any and all claims, demands, suits, or causes of action, damages, losses, and costs, fees and expenses (including, without limitation, reasonable attorneys’ fees) related thereto, (collectively “Losses”) arising from or relating to: (a) Your Contribution; (b) Your access to, or use of, the Platform, or (c) failure to comply with these Terms or Our privacy policy.
11. Revision of Terms. These Terms and our privacy policy constitute the entire agreement between You and Us with respect to the Platform, superseding all other prior agreements that might exist. We, in collaboration with Children’s National Hospital, may revise the Terms at any time by posting the revised Terms on the Platform or otherwise notifying you. All revised Terms are automatically effective as soon as they are posted or provided. Your continued access to, or use of, the Platform constitutes your agreement to be bound by the revised Terms. You should therefore periodically visit this page of the website and print the latest version of the Terms of Use for your records.
12. General Provisions. You may not assign or transfer Your rights or obligations under these Terms without Our prior written consent. Any other assignment or transfer by You is void. You may not use Our (or Our licensors’) or Children’s National Hospital’s name, logo, or trademark in any manner, including without limitation in any advertising, promotional material, press release, publication, public statement, or announcement, or through any form of other media, written or oral, (except to the extent that use of Our name (but not trademark or logo) is reasonably necessary for your permitted use of the Platform) without Our or Children’s National Hospital’s prior written consent. If any provision of this Agreement is held invalid or unenforceable, such provision shall, to that extent, be deemed omitted, and the balance of this Agreement will be enforceable in accordance with its own terms. Failure to exercise or delay in exercising any right hereunder, or failure to insist upon or enforce strict performance of any provision of these Terms, shall not be considered waiver thereof, which can only be made by a signed writing. You understand and agree that Children’s National Hospital is an intended third-party beneficiary of these Terms and is entitled to all of the rights, benefits, and protections of, and is entitled to enforce, these Terms directly as if it were a party hereto. These Terms are governed by the laws of Tennessee without regard to principles of conflicts of laws, and the state and federal courts sitting in Davidson County, Tennessee shall have proper and exclusive jurisdiction and venue over any disputes arising from or relating to these Terms or the Platform.