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Welcome to NeuroLifeNow (NLN, as defined below). By using NLN you will be joining a community of over 12 million people in the UK who are affected by over 470 neurological conditions. By being an active part of this community, your experiences will be collated and presented to meaningfully inform and influence key decision makers at local and national level, to inform and influence improvements to care and support.

Please see our Privacy & Data Protection Policy that outlines how we handle the information you share with us.

WHO WE ARE: NeuroLifeNow (or NLN) is a person reported experience & survey research platform developed and managed by the Brain & Spine Foundation (registered charity 1098528) (B&SF), working in collaboration with the Neurological Alliance of England (registered charity 1039034) (NA). These Terms are a binding contract between the Individual and B&SF concerning your use of NLN.

IMPORTANT: Use of NLN will enable you to actively contribute to the community but will not give health or support advice. FOR ALL MEDICAL EMERGENCIES, YOU SHOULD CONTACT YOUR HEALTHCARE PROFESSIONAL IMMEDIATELY. DO NOT USE NLN, OR ANY NLN CONTACT DETAILS, TO COMMUNICATE MEDICAL EMERGENCIES.

If you need more general non-urgent advice and support, please call Brain & Spine Foundation Helpline on 0808 808 1000.

Please note: These Terms (together with our Privacy & Data Protection Policy provide you with information about the B&SF, NeuroLifeNow (NLN) and set out the legal terms and conditions by which you may access and use NLN.

These Terms will apply to any use of NLN. By using NLN you confirm that you accept and agree to comply with these Terms, so please read these terms carefully and make sure that you understand them before registering to use NLN.

These Terms may be updated from time to time, so please check these Terms regularly to ensure you understand the terms which will apply at that time.

 

  1. DEFINITIONS USED IN THESE TERMS

 

“NeuroLifeNow ” and “NLN “ is applicable software designed to run on a computer or mobile device (such as a smartphone or tablet), through a web server and is accessed by you or an Invitee through a web browser with an active internet connection.

“Privacy Policy” means the privacy and data protection policy applicable to your use of NLN which was notified to you during the completion of the survey and which is available for on our website.  

“Data Access Board” refers to a group established by the B&SF and the Neurological Alliance of England to review applications from sources such as NHS Digital, Public Health England, NLN users, and other organisations to access data from NLN database. The Board is responsible for assessing applications requesting access to data extracts and controlling the criteria for accepting, accepting with conditions, or rejecting any such requests or applications.

“Disclaimer(s)” mean(s) any notices or disclaimers which you are notified of from time to time and accept as part of NLN.

“Individual” means the holder of the relevant NLN user, which for the purposes of these Terms may also be referred to as “you”.

“Invitee” means someone who is invited by an Individual to complete surveys on behalf of that Individual.

“Maintenance” refers to the modification of NLN from time to time to correct faults or to improve performance or other attributes.

“Research” refers to an activity undertaken by NLN team, both clinical and academic scientists at universities or industry partners in the UK or globally.

“Terms” means these Terms and Conditions, which may be updated by B&SF from time to time.

“User Generated Content” means information an Individual provides through NLN in the form of questions you submit or questionnaires you answer.

 

YOUR PERSONAL DATA

  1. These Terms refer to and sit alongside the Privacy & Data Protection Policy which, along with the terms of any consents you may have provided (and any other notices provided to you within the functionality of NLN), set out the basis on which B&SF may process any personal data collected from you, or provided by you, in using NLN.

 

  1. Your account and registration information will be used as necessary for the operation and fulfilment of these Terms. B&SF and NLN may use your contact details provided to send you updates and account information necessary for the service, subject where applicable to your preferences.

 

  1. These Terms are without prejudice to any other marketing consents or communication preferences you may have provided to B&SF by other means, including the B&SF or NLN website.

USE OF THE NEUROLIFENOW

  1. NLN is designed to be an interface through which an Individual affected by one or more neurological conditions may enter certain personal information including concerning their lifestyle and confidential healthcare information.

 

  1. Access to NLN will be activated once and you have agreed to these Terms & Conditions and the Privacy & Data Protection Policy. During the registration process the Individual must agree to these Terms, as well as accepting the Privacy Policy and our privacy and healthcare Disclaimers, which form part of these Terms. However, please note that B&SF and NLN reserve the right to refuse or deny any application access to NLN for any reason.

 

  1. It is your responsibility if your if device has been compromised in any way, or if a device on which an Individual has previously logged into NLN has been lost or stolen. In such event an Individual must notify B&SF by emailing [email protected]

 

  1. It is your responsibility to keep your email address and preferences up to date with NLN and the B&SF to ensure that you receive notification of newly released information and general notices relating to NLN in a timely manner. This can be done by emailing us on [email protected] B&SF is not responsible for any loss or damage which may result from an Individual failing to provide an up-to-date email address.

 

  1. It is understood and accepted that some Individuals may require someone else to access NLN on their behalf. It is the Individual’s responsibility to control who has access to their details, what type of access they have, and for what duration.

 

  1. You can discontinue use of NLN and/or any communications at any time by emailing [email protected].

 

  1. If you cancel your registration with NLN, B&SF will remove your contact details from the B&SF systems (save for some basic information about you, which may be kept as a record that you have asked to cancel your registration). B&SF will however continue to store certain anonymous and/or aggregated data (including User Generated Content) for analytical, statistical and Research purposes, as set out in the Privacy & Data Protection Policy.

 

SHARING OF INFORMATION AND USER GENERATED CONTENT

  1. All personal information stored in NLN will be handled securely by B&SF and in accordance with the Privacy & Data Protection Policy.

 

  1. The Individual agrees that NLN is a service offered as an information management tool and understands that it provides the Individual with online access any User Generated Content that the Individual has entered into NLN. The Individual is solely responsible for any sharing of such User Generated Content that Individual intentionally or unintentionally communicates to others, including to and through any Individual’s authorised Invitee(s).

    An Individual agrees that any User Generated Content may be shared by the B&SF in an anonymised form with researchers, clinicians, and other suitable parties if the B&SF consider that this information would be valuable for Research or inform and influence key decisions relating to the care, support and quality of life of those affected by neurological conditions, and such data sharing is roved by the Data Access Board.

  2. If an Individual decides that they wish to limit the personal information they wish to share with the B&SF/NLN, or withdraw any consent previously given, then that Individual can contact B&SF/NLN at any time by emailing [email protected]. If requested, the B&SF will delete any information which allows the Individual to be personally identified by reference to their User Generated Content, but with B&SF retaining access to the anonymised User Generated Content for Research purposes.

 

  1. The B&SF will process all personal data in line with the principles defined in the Data Protection Act 2018 and the UK General Data Protection Regulation, and will ensure that personal data in NLN will be processed in ways that are:

 

  1. Lawful, fair and transparent.
  2. Collected for specific explicit and legitimate purposes.
  3. Adequate
  4. Relevant and limited.
  5. Accurate and up to date.
  6. Not kept for longer than necessary; and
  7. Secure

 

MISUSE OF THE NEUROLIFENOW

  1. The Individual agrees that they will not use NLN to:

 

a. post or send any harassing, defamatory or offensive material, or material which infringes the property rights of others (including but not limited to confidential information and intellectual property);

b. extract or misuse the personal data of others.

c. disseminate any unsolicited or unauthorised advertising, promotional materials, or any other form of solicitation or for any other commercial purposes.

d. create a database (electronic or otherwise) that includes material downloaded or otherwise obtained from NLN, whether or not intended to support a commercial enterprise.

e. transmit or re-circulate any material obtained from NLN to any third party except where expressly permitted on NLN.

f. download or “screen grab” content from NLN, nor remove the copyright or trademark notice(s) from any copies of any content whether or not made in breach of these Terms.

g. harm NLN or disseminate any material that contains software viruses, or any other computer code, files or programs designed to interrupt, damage, destroy or limit the functionality of any computer software or hardware or telecommunications equipment or otherwise to hack (or attempt to hack) into NLN;

h. in any way that is otherwise unlawful (including fraudulent) or that might bring B&SF or NLN into disrepute.

 

  1. The B&SF accepts no responsibility for any harassing, defamatory, offensive, or otherwise unlawful or infringing material that an Individual may post in NLN by way of User Generated Content or otherwise. Any views expressed by an Individual through NLN should not be treated as the views of the B&SF/NLN or NA or views that the B&SF/NLN or NA endorse.

 

  1. Your use of NLN will be logged for support purposes and to detect or identify faults, issues or misuse. The B&SF reserves the right, at its sole discretion, to suspend or discontinue an Individual’s use of NLN and general use of NLN itself, and the Individual will be notified if their access is discontinued.

 

INTELLECTUAL PROPERTY

  1. The B&SF/NLN Is the owner or the licensee of all intellectual property rights on NLN, registered or otherwise, and in the material published on it (including NLN name and logo). All text, code, designs and images are protected by copyright and design laws and treaties worldwide.

 

  1. The Individual hereby grants the B&SF/NLN (and its assignees and successors in title) the irrevocable right to use, share and license any User Generated Content posted via NLN for the purposes and in the manner set out in these Terms. The Individual expressly waives any moral rights in their User Generated Content, including the right to credit or attribution, and agrees that such User Generated Content may be used freely by the B&SF/NLN without credit or attribution in accordance with these Terms.

 

  1. The B&SF/NLN grants each Individual a limited, revocable licence to use NLN and the associated services in accordance with these Terms. This licence expressly excludes, without limitation, any reproduction, duplication, sale, resale or other commercial use of NLN and the associated services or making any derivative of NLN or the associated services without the express agreement of the B&SF.

 

  1. All rights are reserved, and no rights are hereby granted by B&SF or NLN except as strictly necessary for an Individual’s use of NLN. Nothing in these Terms shall be construed as granting an Individual any wider licence to use or reproduce any content included on NLN or the associated services. No use of the B&SF or NLN name, logos and/or other trademarks may be made by an Individual without separate express written permission.

 

THIRD PARTY CONTENT

  1. NLN contains links to websites operated by third parties which are provided for Individual’s convenience only. The B&SF does not control such websites and B&SF is not responsible for the content and performance of these sites. The inclusion of links to other websites does not imply any endorsement of the material on the websites or any association with their operators.

 

  • The B&SF does not operate, control, or endorse any information, products, or services provided by third parties through the internet. Use of other sites is strictly at an Individual’s own risk, including, but not limited to, use of cookies or similar technologies, and any risks associated with destructive viruses. Each Individual is responsible for viewing and abiding by the terms and conditions of use and the privacy statements of any third-party websites accessed.

 

LIABILITY PROVISIONS AND DISCLAIMERS

  1. On NLN you may be offered automatic links to or information about other websites. You acknowledge that the content on those pages is not subject to the control of B&SF, their owners may be independent from the B&SF and the B&SF does not endorse or accept any responsibility for their content. The B&SF will not be liable for any loss or damage that may arise from your use of such links or other websites.

 

  • Please note that NLN is intended only for domestic and private use. As such, the B&SF and NLN will not accept any liability to you for any loss of profit, loss of business, business interruption, or loss of business opportunity.

 

  1. As you were fully notified and duly accepted as part of the registration Disclaimers, and as you again accept by these Terms, NLN will not give medical, health or support advice and should not be used for medical emergencies. B&SF and NLN exclude to the fullest extent permitted by applicable laws all liability in any damage, loss or injury suffered as a result of your failure to understand this.

 

  1. We may have a safeguarding duty to share concerns that we have about conversations, emails, posts, messages, replies, questions or comments that indicateyou or someone else might be at risk, with the relevant services (including names and contact details where necessary, and with or without notice or reference to you). This includes any reference to or indication of abuse or neglect. However, we do not specifically monitor NLN for such concerns or disclosures and NLN is not an appropriate forum to raise such concerns, which should properly be referred directly to the relevant local authorities or emergency services.

 

  • NLN, and NLN’s Insights and tools are works-in-progress and have not been fully peer-reviewed or tested. Whilst every effort has been made to ensure the information presented is accurate, the B&SF cannot guarantee that these are complete, accurate or error-free.

 

  • In NLN, any attribution that an Individual makes between a side effect and a form of medication or treatment represents that Individual’s view and not the view of the B&SF.

 

  1. B&SF and NLN exclude to the fullest extent permitted by applicable laws all liability in connection with any damage or loss caused by computer viruses or other malicious code originating or contracted from NLN. B&SF recommends that you should virus check all materials downloaded from any emails you receive from B&SF/NLN and regularly check your devices for the presence of viruses and other malicious code.

 

  1. To the extent permitted by law, the B&SF and NLN exclude all other conditions, warranties, representations, or other terms which may apply to NLN or any content on it, whether express or implied. B&SF and NLN will not be liable to any user for any loss or damage, whether in contract, tort (including negligence), breach of statutory duty, or otherwise, even if foreseeable, arising under or in connection with:

a. use of, or inability to use, NLN.

b. failure to read or accept our Privacy Policy and any Disclaimers or other notices which you accepted when registering; or

c. use of or reliance on any content displayed on NLN.

 

OTHER IMPORTANT TERMS

  1. Each paragraph of these Terms operates separately. If any court or relevant authority decides that any paragraph is unlawful or unenforceable, the remaining paragraphs will remain in full force and effect.

 

  1. If the B&SF fails to insist that you perform any of your obligations under these Terms, or if the B&SF does not enforce its rights against you, or delays in doing so, that will not mean that the BS&F has waived its rights against you and will not mean that you do not have to comply with those obligations.

 

  1. These Terms are governed by English law and are available only in English. The B&SF and you both agree that the courts of England and Wales will have exclusive jurisdiction over any dispute or claim arising under these Terms.

 

COMPLAINTS AND SUGGESTIONS

  • If you have any:
    a. concerns or feedback you wish to raise with B&SF or NLN;
    b. complaints or comments about the services provided; or
    c. queries about these Terms or about NLN generally, please do not hesitate to contact us by email at [email protected].

 

CHANGES TO NLN AND THESE TERMS

  1. The B&SF reserves the right to carry out periodic Maintenance and updates to NLN. When making these changes, every effort will be taken to minimise the disruption to Individuals and Invitees using NLN.

 

  1. B&SF reserves the right to change any part of the We Are Neuro Community, NLN, or the third-party content, as well as to change these Terms or to terminate NLN in its entirety, and B&SF does not accept any liability which may arise from Its exercise of that right. B&SF will give you reasonable notice of any such changes via NLN where possible. Please check here regularly for the latest copy of these Terms.