PhenomeCentral Terms and Conditions of Use v1.2 03/03/2016 

These Terms and Conditions of Use (“Terms”) are a legally binding agreement between you (the “user”), a PhenomeCentral user, and PhenomeCentral (“PhenomeCentral” or “us” or “our” or “we”) and govern your use of all the genomic and phenomic information, data, statistics, reports, software, graphics and communications that we make available to you (“Data”). These Terms also govern all services we may provide through any of our web-based portal that we refer to as PhenomeCentral (“Services”).

Read these Terms carefully before using any part of PhenomeCentral. Using PhenomeCentral indicates that you have read, understood and accepted these Terms.

Using PhenomeCentral

By using PhenomeCentral, you confirm that you are a health care professional or scientist working with patients affected by rare disorders.

Your right to use PhenomeCentral and Data is conditional to your compliance with these Terms. So long as you comply with these Terms, you may access and use PhenomeCentral for the purpose of facilitating data discovery and matching of patients with similar phenotypic presentation or genotypic variants.

If you breach any of these Terms, your right to use PhenomeCentral and any further access to the platform and display of Data within PhenomeCentral will terminate automatically.

In order to become a PhenomeCentral user, you must successfully register with us and request that we open a user account for you, in accordance with the PhenomeCentral – DATA DISPLAY AND MATCHING FRAMEWORK, POLICIES AND PROCEDURES, as updated from time to time. You must, at all times, provide true, accurate, current and complete account information. Principal investigators will need to apply for account and be responsible for students, researchers or lab members using such an account. After registration, you may make changes by logging into your account and making such changes directly or by contacting us. If you forget your password or other log-in information, we will send a password update to your provided email address. If you believe your password or security for PhenomeCentral has been breached or compromised in any way, notify us immediately.

You are responsible for obtaining and maintaining all equipment and services necessary to access the PhenomeCentral platform and for paying related charges, where applicable.

The Data, Services and other information provided on the PhenomeCentral platform are for informational and research purposes only, and do not constitute medical, legal or other professional advice. We do not promise that everything provided on and through PhenomeCentral will be accurate, complete, adequate or current.

Modifications to the Terms and Conditions of Use

We may alter PhenomeCentral and/or may choose to modify, suspend the Services. If we decide to suspend PhenomeCentral, we will provide you with advance notice and make reasonable steps to facilitate your retrieval of the Data you deposited.

We may also change or update these Terms from time to time, and legal notices and/or terms located on particular pages of PhenomeCentral may supersede provisions contained in these Terms. PhenomeCentral may change these Terms and Conditions of Use from time to time. Such amended Terms and Conditions of Use shall be effective upon publication on this website. By accessing and using PhenomeCentral you are accepting that you are bound by the (then) current Terms and Conditions of Use. Please check these Terms and Conditions regularly to ensure that you are aware of all terms governing your use of the PhenomeCentral Platform.

Links to third-party websites

In some cases, PhenomeCentral will provide links to third-party websites. If you use these links, you will leave PhenomeCentral and PhenomeCentral does not control any of these third-party websites and is not responsible for such websites (or the product, services or content available through them).

External communications with other users

Through your use of the PhenomeCentral platform you may interact with other users by use of the PhenomeCentral messaging system, via email or other means of communications. PhenomeCentral does not monitor or supervise such conversations, and is not responsible for the content or outcome of such interactions.

Submitting Data to PhenomeCentral

An important function of PhenomeCentral is to facilitate communication between clinicians/scientists caring for patients with similar phenotypic presentation or genotypic variants, by allowing display and matching of de-identified (coded) patient data to approved PhenomeCentral users (“Submissions”). All users can deposit Data to PhenomeCentral, and are responsible for selecting appropriate levels of display.

As between you and PhenomeCentral, you retain ownership of your Submissions. You are solely responsible for ensuring that you have the appropriate permission and authority to submit Data. We are not responsible for any loss, theft, or damage of any kind to any Submission.

With regard to Submissions, you agree to the following general terms, in addition to other specific conditions detailed in the following sections:

• You own all rights in your Submissions (including the right to reproduce and display), or you have acquired all rights in your Submission necessary to grant us the rights in your Submission as detailed herein;
• PhenomeCentral will not be subject to any fee, license fee, clearance fee or other financial obligation by virtue of having received your Submission;
• Your Submission does not infringe the copyright, trademark, patent, trade secret, or other intellectual property rights, privacy rights, or any other rights of any this party;
• Information contained in your Submission is not false, inaccurate or misleading;
• Your Submission does not violate any law;
• Your Submission does not contain any viruses, worms, spyware, adware, or other potentially damaging programs or files.

By uploading a Submission, you hereby grant PhenomeCentral the right to use, analyze, distribute, reproduce, modify, adapt, translate and disclose, and display Data contained in your Submission, in whole or in part, on the PhenomeCentral portal. For the avoidance of doubt, PhenomeCentral does not engage in data sharing, but only displays matched Data that has been submitted by users. In the process of displaying Submissions, it may need to use, analyze, distribute, reproduce, modify, adapt, translate and disclose such Data to enable the matching algorithm and display process.

PhenomeCentral reserves the right, but is not obligated, to monitor any area of the website through which Submissions may be contributed. PhenomeCentral is not required to display any Submission, and reserves the right to remove at any time or refuse to display any Submission, for any reason.

Data display rules

The following rules govern display of Data submitted to PhenomeCentral:

• Aggregate data and derived statistics may be shared across all users of PhenomeCentral;
• PhenomeCentral may share aggregate data with third parties, including academic institutions, not-for-profit organizations, and commercial entities;
• PhenomeCentral may report aggregate date and derived statistics to the scientific community through publications, abstracts, academic poster sessions, and oral presentations.
• As a user, you may share de-identified (coded) individual-level genomic data and associated phenotypic information with other registered users of the platform. You are solely responsible for setting the Data display level permissions, based on applicable patient consents obtained, and any applicable local ethical and legal requirements, and for revoking Data display level permission to PhenomeCentral users.

Ethical and legal requirements for Submissions

By submitting to PhenomeCentral, you agree to the following:

• Only de-identified (coded) Data is accepted. You are responsible for ensuring that all the uploaded individual data, including genomic data and pedigree data, does not contain any personal identifying information about the patient.
• You are responsible for ensuring that the patient has provided the appropriate informed consent for the uses being made of the information submitted.
• You are solely responsible for ensuring that Data is removed from PhenomeCentral, when required (for example, in the case of patient withdrawal of consent, of an institutional requirement, etc.).
• You certify that all data was acquired by following generally accepted human subject protection guidelines, rules and laws. You further certify that acquisition, use and display of the Data in PhenomeCentral complies with applicable local, national and international guidelines, laws and regulations.
• You agree not to intentionally link or combine the Data to other information or archived data available elsewhere, in a way that could lead to the identification of an individual patient, except by prior written permission from the provider or his sponsoring Institution, where required.
• You certify that no attempt to identify individual patients, or to directly contact any patient, will be undertaken, except by prior written permission from the provider or his sponsoring Institution, where required.
• You agree to treat all Data displayed within PhenomeCentral as confidential and will not share it with others, except by prior written permission from the provider or his sponsoring Institution, where required.

Publication rules

Prior to using PhenomeCentral Data in publication, the user will contact the owner of the matching dataset to assess the integrity of the match and if validated will offer appropriate agreed recognition of their contribution. If the magnitude of the contribution warrants, this may include co-authorship to at least one representative from the project/participating centre (possibly the member who submitted the patient data).

If PhenomeCentral enables a research publication, the authors much acknowledge PhenomeCentral using the following wording:

 "This study makes use of data shared through the PhenomeCentral repository. Funding for PhenomeCentral was provided by Genome Canada and the Canadian Institute of Health Research (CIHR)."

Unauthorized activities

We authorize your use of PhenomeCentral only for the purposes set forth in these Terms and Conditions of Use, and all rights in the PhenomeCentral platform belong to us.

When using this platform, you agree to abide by common standards of etiquette and to act in accordance with the law. For example, you agree as follows:

• You will not modify, publicly display, reproduce or distribute any of the content of the platform;
• You will not use PhenomeCentral in a manner that violates any local, regional, national or international stature, regulation, rules, order, treaty or other law;
• You will not use the platform to stalk, harass, or harm another individual or to impersonate any person or entity or otherwise misrepresent your affiliation with a person or entity;
• You will not attempt to discover the identity of people whose personal genomic or phenotypic data is stored on the platform;
• You will not interfere with or disrupt the platform or servers or networks connected to the platform;
• You will not use any data mining robots, or similar data gathering or extraction methods in connection with the Platform; and
• You will not attempt to gain unauthorized access to any portion of the platform.

Indemnification

You agree to indemnify and otherwise hold harmless PhenomeCentral, its officers, employees, agents, subsidiaries, affiliates and other partners from any and all liability, including any and all direct, indirect, incidental, special, consequential or exemplary damages, and any and all costs and/or expenses (including reasonable attorneys’ fees) resulting from (i) your use of the PhenomeCentral platform, including, but not limited to, your access to, submission of, or distribution of, Data to or from the PhenomeCentral platform; (ii) any misuse, unauthorized access to, disclosure, alteration, or destruction of the PhenomeCentral platform, information contained in the website, and/or your communications with or through the website, or (iii) any other matter relating to the platform. You understand and agree that PhenomeCentral may disclose information provided if in its good faith belief such disclosure is required by applicable law.

Disclaimer of warranties

PhenoneCentral does not provide medical advice, diagnosis of treatment. The PhenomeCentral website and al materials are for informational purposes only and are provided “as is” and on an “as available” basis.  PhenomeCentral displays user Submissions in good faith as a research tool, does not verify the accuracy, clinical validity or utility of the data. PhenomeCentral makes no warranty, express or implied, nor assumes and legal liability or responsibility for any purpose for with the Data are used.

PhenomeCentral does not warrant the platform will be uninterrupted or error-free or that defects in the platform will be corrected, that any information contained on or transmitted through the platform is complete, accurate or current, that user or other information will be completely secure from unauthorized access or disclosure, or that any information will be completely secure from unauthorized access or disclosure, of that any information is free of viruses or other rogue programming.

Limitation of liability

PhenomeCentral will not be liable to you for any damages resulting from your use of the PhenomeCentral platform or any part thereof or from your displaying, copying, or downloading any materials to or from the platform. In no event shall PhenomeCentral be liable to you for any indirect, extraordinary, exemplary, punitive, special, incidental, or consequential damages (including loss of data, revenue, profits, use or other economic adavantage) how ever arising.

Termination of access

If PhenomeCentral believes that you are not complying with these Terms and Conditions of Use, we will communicate with you and provide recommended corrective action(s). However, PhenomeCentral reserves the right to terminate your access to the platform, deactivate your account, and/or this agreement for any reason, and/or for any and all violation of these Terms, without providing prior notice to you.

General terms

These Terms are governed by the laws of the Province of Ontario (Canada). This agreement was drafted against the background of Ontario law and is to be interpreted in accordance with that law. Any disputes relating to these Terms or the PhenomeCentral Platform will be heard by courts the jurisdiction of the province of Ontario (Canada).

If any of these Terms are deemed inconsistent with applicable law, them such term(s) shall be interpreted in accordance with law, and no other terms will be modified. If we choose not to enforce any of these Terms, we are not waiving any other rights pursuant to this agreement.

These Terms constitute the entire agreement between you and PhenomeCentral and therefore supersede all prior or contemporaneous negotiations, discussions, representations, or agreements between you and PhenomeCentral, about the use of the PhenomeCentral and Data.

The proprietary rights, disclaimer of warranties, indemnities, limitations on liability and general provisions of these Terms shall survive any termination of these Terms.

Contact us

If you have any questions about these Terms and Conditions of Use, or otherwise need to contact us for any reason, you can reach us at: support@phenomecentral.org.