Last updated on December 12, 2023
Longenesis, SIA, Reg. No 40203211852, address Zaubes str. 9A-23, Riga, Latvia, LV-1013 (Us, we, our) is the sole owner and operator of the Longenesis.Curator platform (Platform, Curator).
The Terms and Conditions (Terms) defined below are legally binding to anyone who has registered for an account and is using the Platform as a sole practitioner or on behalf of an organization.
Read and revise these Terms carefully before use of the Platform.
Please note, breaching these Terms may result in pecuniary losses or damages which may lead to legal action.
If you do not agree with any provision of these Terms or them entirely, please discontinue using the Platform.
These Terms are legally binding and are meant to protect our interest and that of our Publishers and Collaborators.
You agree that by clicking "I accept", accessing or using our Platform (as described below), you are agreeing to enter into a legally binding contract with Us (even if you are using our Platform on behalf of a company).1. Scope
The Platform is a database of statistical information which is intended for facilitating collaborative research in the field of healthcare. Curator offers Publishers to upload, manage and showcase the scope of data in their organization to Collaborators for research initiatives without compromising the privacy of the patients, as well as other participants and data protection regulations. We stand for safe clinical data curation to accelerate medical research projects and other healthcare initiatives. For this purpose the Platform increases potential participant visibility in the research trials and builds a path to patient-centric medicine.
Platform allows potential partners real-time patient cohort identification matching inclusion/exclusion criteria and further collaboration initiation without compromising patient privacy and confidentiality.2. Services
The Curator platform operates as a database of anonymised statistical data published by medical and life science research institutions, patient organizations and other data custodians (Publishers) providing specific datasets to accelerate collaboration and patient cohort selection for Collaborators. Datasets can be accessed solely by verified Collaborators - medical research organizations, pharmaceutical companies and other potential collaboration partners. Curator depicts only real datasets provided by Publishers, which are anonymised and aggregated prior to publishing. No personally identifiable information of any data subjects must be publicly available through the Platform.3. Account registration process
To access our Platform, you have to register an account or sign up with an existing email address or supported authentication service providers, such as Google or eParaksts. Upon registration, we will provide you with a choice of roles. You can register an account either as a Publisher, Collaborator or a combination of both.
. By registering for an account, you acknowledge and agree to the collection, processing, and storage of your data in accordance with the Platform's privacy practice.
You are required to provide accurate, current, and complete information. This includes, but is not limited to, your name, contact details, and organizational affiliation. Your use of Curator must adhere to all applicable laws and regulations. Any use of the Platform for illegal or unauthorized purposes is strictly prohibited.
When selecting a Publisher role, you will be allowed to immediately publish anonymized datasets in standard formats (.csv, .json, .xls) or arrange dataset publication with us. For more information about publishing data please visit our Help Center
If you have entered into a Services agreement with us, we can arrange a registration of a Publisher account. Any actions taken on your behalf will strictly adhere to the permissions granted within the Services agreement.
Upon registration, Collaborators are granted access to datasets published exclusively for demonstrational purposes. Full access to the complete dataset collection is permissible only upon payment of the standard fee or if any alternative arrangement with Us is in place.
You are obligated to establish a secure password and maintain the confidentiality of your access credentials to prevent third-party access. Sharing individual access credentials is strictly prohibited, with an exception of employees of your organization with whom you have a contractual relationship.
In the event of unauthorized access to your account or any security breach, you are obligated to promptly notify Longenesis. This notification should be directed to the designated email address: firstname.lastname@example.org
or the contact channel provided in the Platform.4. Acceptable Use
You are responsible for making all arrangements necessary to have access to our Platform including the use of equipment which is compatible with it. You are also responsible for ensuring that all persons who access Curator through your account are aware of these Terms, and comply with them.
By accessing and using Curator, you agree that you will not (or attempt to):
- access or use Curator for any illegal or unauthorized purpose or engage in, encourage or promote any illegal activity, or any activity that breaches or violates these Terms,
- present any false, inaccurate or misleading information in an effort to attempt to circumvent any access restrictions, availability of the Platform or content copyrights;
- register, use or attempt to use another organization's account without authorisation from such organization;
- share your Curator account password with someone or allow them to access any part of the Platform;
- modify, adapt, hack or emulate the Platform;
- use any robot, spider, crawler, scraper or other automated means or interface not provided or authorized by us to access the Curator or to extract data;
- copy, sell, rent, or sublicense the Platform to any third party;
- circumvent, reverse-engineer, modify, disable, or otherwise tamper with any filtering, security measures or other features designed to protect the Curator or third parties or encourage or help anyone else to do so;
- publish or transmit any content that is defamatory, harmful or otherwise objectionable in relation to use of the Platform;
- infringe upon or violate our intellectual property rights or those of any third party.
Access to Curator is permitted on a temporary basis, and we retain the right to withdraw or amend the Platform without prior notice. We will not be liable if for any reason the Curator is unavailable at any time or for any period. When performing planned Platform updates or maintenance, we may inform you of it at least 2 days in advance, if it will affect any processes or the content stored within the Platform.
Periodically, we may restrict access to some parts of, or the entire Platform, to any registered accounts, especially in cases mentioned in section 10 "Account Suspension and Termination" of these Terms. We will not be held liable if, for any reason, if the Curator is unavailable at any given time or for any duration.5. Responsibility of the Publishers
Publishers are Clinical Institutions, Patient Organizations, Registries, Researchers, Biobanks, and other custodians of various medical datasets.
The Publishers are responsible for the use of the Platform and the provided content complies with all applicable laws, regulations, and ethical guidelines governing scientific research and information dissemination.
The Publishers retain ownership of the intellectual property rights in the content they submit. The Platform does not claim ownership of the content. The Publishers grant the Platform a non-exclusive, royalty-free, worldwide license to use, reproduce, modify, adapt, publish, translate, distribute, and display the content they submit to the Platform. This license is granted solely for facilitation of collaborative research partnership facilitation and improving the Platform. The content that may be protected by others' intellectual property rights can be copied, uploaded, downloaded, or shared only if you have obtained the right to do so. The Platform will make reasonable efforts to attribute the content to the respective Publishers when displaying or using it.
To ensure safe and compliant data showcasing, the Publishers must anonymise any datasets before submitting them to the Platform and ensure that the identities of research subjects cannot be readily ascertained with the data. Publishers must also strip the data of identifiers leaving the actual datasets in the local data storages. The information submitted and published in the Curator is used only to describe a statistical overview.
Publishers within the Curator platform facilitate the availability of content to Collaborators, enabling them to access, view, and contact the Publisher for obtaining the datasets. The data-sharing practices for research align strictly with the informed consent obtained from the data contributors, ensuring ethical and responsible usage within the Platform.
You may request our help with dataset anonymization through any of our in-Platform communication options or by sending an email to email@example.com
. Find out more about dataset anonymisation in the Help Center
Publishers having entered into Services Agreement for the Longenesis.Engage can publish datasets selected from their projects on Longenesis.Engage or arrange the publishing of any other information intended for that purpose with us. All Publishers have the right to request removal of provided data from the Curator at any time.
The Platform reserves the right to review, moderate, and, if necessary, remove or refuse to display any content that violates the Platform's policies, guidelines or the law. In the event that the Platform removes or restricts access to the content, the Platform will make reasonable efforts to notify Publishers and provide a justification for such action.6. Responsibility of the Collaborators
Curator provides access for the Collaborators - Pharma, CRO, Researchers or others interested in obtaining information on the Platform - to the dataset collection without showcasing any identifiable information of private persons, at the same time providing functionality to review and query descriptive information about the datasets available at Publisher's organization.
All Collaborator organizations will be subject to verification and additional proof of the representative's authorisation may be requested. If no specific distinctive terms apply, full Platform access will be provided only after the account is approved and first payment made.
Upon receipt of all requisite data, we will verify the registered account within 2 business days.
While organization verification is performed, unverified Collaborators can access demo data, which is showcased on the Platform.
All verified Collaborators have access to dataset collection in the Curator, and agree to:
- Use the data obtained in on the Platform for the purposes of collaborative research initiation only;
- Protect information confidentiality, integrity and availability;
- Follow, as appropriate, all applicable national and international regulations, as well as relevant institutional policies and procedures for patient's rights and browsing aggregated medical datasets;
- Not attempt to identify individual participants from whom the data were obtained;
- Not sell any of the data obtained from dataset collection designed by Longenesis;
- Not to infringe or attempt to violate Longenesis intellectual property rights or those of any third party;
- Follow guidance on information security best practices that outlines expected data security protection (e.g., physical or digital security measures) to ensure that the data are kept safe and not released to any person without the data access permission.
We can register an account on your behalf, if you have entered into a legal relationship with us. In such cases we will send you a personalized confirmation link to the email address you've provided.7. Pricing
Collaborators are obligated to pay a standard license fee to gain full access to datasets disseminated by Publishers through the Platform.Public Access
The Platform may, at its discretion, provide a public access period during which verified Collaborators will be able to access certain features of the Platform without a fee.Payment Terms
The Platform accepts bank transfer payments. The Platform fees shall be invoiced on an annual basis contingent upon the negotiated Contract. Collaborators are responsible for ensuring timely payment.Taxes
Subscription fees do not include taxes. Collaborators are responsible for paying any taxes or duties imposed by relevant tax authorities.Changes to Fees
The Platform retains the right to modify fees and introduce new pricing. Changes to fees will be communicated to Collaborators in advance with the proposal of contract addendum.8. Communication
Our Publishers and Collaborators with a registered account, agree to receive communications, agreements, and notices that we provide in relation to Curator (Communications), including, but not limited to, Communications related to our delivery of the Platform and your subscription, via electronic means, including by email, text messages, in-Platform notifications, or by posting them on the Platform. We warrant that all Communications we provide to you electronically satisfy any legal requirement that such Communications be in writing or be delivered in a particular manner and you agree to keep your account contact information current. You can opt out from receiving any product marketing materials at any time.
We will contact any of our Collaborators or Publishers directly, if:
- We need additional information regarding a registered organization account or your relationship with the entity;
- You have completed certain step in the Platform and have to provide additional essential details;
- There has been no activity in your account, have not scheduled a verification call or published any datasets at least 3 business days after registration;
- We notice any suspicious or unusual activity in your account and have a reasonable suspicion of illegal activity or misconduct;
- There is a reasonable suspicion of or revealed security incident or data breach involving your account;
- We perform or plan to perform scheduled or emergency Platform maintenance and updates or there has been a severe security incident.
. It describes how we treat personal data of our Publishers, Collaborators and other Platform visitors.
Violation of any part of these Terms can result in action against your account. In cases of severe violations, we may suspend your account for a period of up to 30 days while we conduct an investigation and review your appeal. Prior to account suspension we will notify you and describe the violation via email, in-Platform notification or by any other electronic or physical means available.
The account can be suspended for a period of up to 30 days after receiving a written notice on the following occasions of misconduct:
- Security risk - if we have a reasonable suspicion that your account has been compromised or is at a risk of compromise;
- Information systems security breach - in case we have a reasonable suspicion or proof of a Platform information security breach performed from your account. If the information security incident is confirmed, your IP address can be blacklisted;
- Violation of law or these Terms - if your account content or actions breaches these Terms, violates law or any regulation.
- Publishing false or deceptive content on the Platform - if we have a reasonable suspicion or proof of content published on your account does not contain real data or has been intentionally deceptive;
- Delayed payment - if the payment is delayed for more than 30 days without a prior notice and a viable reason;
- Research ethics abuse - if using your account, a breach of research ethics code of conduct or an attempt to identify research participants is committed;
- Intellectual property infringement - if there are any well-founded third party claims of unauthorized use of their content on our Platform, and have provided sufficient proof of misconduct.
In the event of a single violation, the account access will be suspended and You may appeal the account suspension within 30 days of losing access. The appeal may be arranged in free text and sent to the email address firstname.lastname@example.org
or directly to our office at Dzirnavu str. 41a-5, Riga, Latvia, LV-1010.
We will review your appeal within 14 days of receipt, and reinstate the account access if it is approved. The account will be terminated after the 30 day period of suspension if we have not received your appeal or have found it invalid.Termination by the Publishers and Collaborators
Publishers or Collaborators may terminate their agreement with the Platform at any time by discontinuing the use of the Platform or arranging the deletion of the account. Account termination does not relieve you of any obligations accrued prior to termination.
Upon account termination, the Publisher's or Collaborator's right to access the Platform immediately ceases. The Platform may, at its discretion, delete or retain the account information, content, and data, as mentioned in the section 11 "Data Deletion Terms", with the understanding that any residual copies may continue to exist within the platform's backups for a reasonable period not exceeding two years after the termination.
Termination does not affect the survival of provisions such as sections 12 "Intellectual Property Rights" and 13 "Limitations on Liability", which shall continue to be enforceable after termination.11. Data Deletion Terms
Upon account termination for any reason, it may take up to 90 days to delete content after we begin the account deletion process or receive a content deletion request. You can choose to delete the content immediately by clicking the "Delete" button for your dataset. After the content is deleted, it may take us up to another 90 days to remove it from backups and disaster recovery systems.
Content will not be deleted within 90 days of the account deletion process in the following situations:
12. Intellectual Property Rights
- where deletion within 90 days is not possible due to technical limitations of our systems, in which case, we will complete the deletion as soon as technically feasible; or
- where immediate deletion would restrict our ability to:
- investigate or identify illegal activity or violations of these Terms (for example, to identify or investigate misuse of our Platform);
- protect the safety, integrity, and security of our Platform, our employees, Collaborators, Publishers and to defend ourselves;
- comply with legal obligations for the preservation of investigation evidence, including data protection regulations and to comply with any record keeping obligations required by law; or
- comply with a request of a judicial or administrative authority, law enforcement or a government agency) and timelines.
The Platform and its original content, excluding content uploaded by Publishers, features and functionality are and will remain the exclusive property of Longenesis and its licensors. The Curator is protected by intellectual property laws of both Latvia and the European Union. Our trademarks and trade dress may not be used in connection with any other product or service, as well as in any publications without the prior written consent of Longenesis.
Publishers are solely responsible for the content made available through Curator, they represent and warrant that:
- They either are the sole and exclusive rights owner of all provided content, or have obtained all rights, licenses, permissions and consents that are necessary to grant the rights to such content;
- the provision of content, and our subsequent use of such content, will not infringe, misappropriate or violate any third party's patent, copyright, trademark, trade secret, moral rights or other proprietary or intellectual property rights, or rights of publicity or privacy, or result in the violation of any applicable laws or regulations.
Longenesis may review conduct and content for compliance with these Terms, and reserves the right to remove any violating content.
Longenesis reserves the right to delete or disable content alleged to be infringing the intellectual property rights of others, and to terminate accounts of infringers.13. Limitation on Liability
We cannot limit our responsibility for any severe consequences arising from our negligence, fraudulent activity, breach of these Terms or the Latvian law. We will not be liable to any Publisher or Collaborator for any direct or indirect, accidental, intricate loss or damage, whether in contract, tort (including negligence), breach of statutory duty, or otherwise, even if foreseeable, arising under or in connection with:
- use of, or inability to use Curator;
- content supplied by third parties;
- use of or reliance on any content displayed on Curator, in particular the use of any content in the course of research study.
To the extent permitted by law, we exclude all conditions, warranties, representations or other terms which may apply to our Platform or any content on it, whether express or implied.
We strive to keep the Platform operating correctly; however, all online services suffer occasional disruptions and outages. Longenesis is not liable for any disruption or loss you may suffer as a result. In the event of an outage, you may not be able to retrieve any content that you've stored.
We will not be liable for any loss or damage caused by a virus, distributed denial-of-service attack, or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of our Platform or to your downloading of any content on it, or on any website linked to it.14. Disputes and Applicable Law
If any dispute or claim arising out of or in connection with Terms or their subject matter or formation (including non-contractual disputes or claims) shall be governed by and construed in accordance with the law of the Republic of Latvia and the European Union.
In the event of any dispute or claim arising out of or in connection with the use of the Platform, the Parties hereby agree to seek resolution through non-judicial means, specifically through arbitration or mediation. The Latvian courts will have non-exclusive jurisdiction over any claim arising from, or related to, a visit to our Platform.15. Final provisions
We reserve the right to modify and update these terms at any time by amending this page. We will notify you of any such changes to our Terms through any means available at the time, in particular via email or in-Platform communication. We encourage you to review the Terms periodically to ensure that you understand the Terms that apply to your access to, and use of, the Curator.16. Contact Us
If you have any inquiries regarding these Terms or any other topic, please contact us at email@example.com or Dzirnavu str. 41a-5, Riga, Latvia, LV-1010.