Disclaimer and Privacy Notice
International Living Donor Liver Transplant Registry - LDLTregistry.org
This is the disclaimer and privacy notice of LDLTregistry.org. In this document, "we", "our", or "us" refer to LDLTregistry.org, which is among others, supported by LDLTregistry.org LTD, with the company number 13940957 registered in England and Wales.
The study academic headquarters are based at the Klinik Hirslanden, Kappelistrasse 7, 8002 Zürich, Switzerland.
The company’s registered office is at Hale House Unit 5, 296A Green Lanes, N13 5TP, London, UK.
The trading address of the company is Garden Flat, 16 Crossfield Road, NW3 4NT, London, UK.
Our email address is admin@LDLTregistry.org. Our main representative data protection officer is Dr Dimitri Raptis (directors@LDLTregistry.org).
Our registered Information Commissioner (ICO) number is: ICO 00012405103 with a reference ID: ZB508985
This disclaimer and privacy notice aims to inform you about how we collect and process any information that we collect from you, or that you provide to us. It covers information that could identify you (“personal information”) and information that could not. In the context of the law and this notice, “process” means collect, store, transfer, use or otherwise act on information. It tells you about your privacy rights and how the law protects you.
We are committed to protecting your privacy and the confidentiality of your personal information. Our policy is not just an exercise in complying with the law, but a continuation of our respect for you and your personal information.
We undertake to preserve the confidentiality of all information you provide to us and hope that you reciprocate.
Our policy complies with the Data Protection Act 2018 (Act) accordingly incorporating the EU General Data Protection Regulation (GDPR).
The law requires us to tell you about your rights and our obligations to you in regard to the processing and control of your personal data. We do this now, by requesting that you read the information provided at http://www.knowyourprivacyrights.org
Except as set out below, we do not share, or sell, or disclose to a third party, any information collected through our website.
1. Data we process
We may collect, use, store and transfer different kinds of personal data about you. The main purpose of this information is to aid the collaborative studies conducted by LDLTregistry.org.
We have collated these into groups as follows:
Your identity includes information such as first name, last name, title, academic qualifications, and other identifiers that you may have provided at some time.
Your contact information includes information such as your institution, department, email address and any other information you have given to us for the purpose of communication or meeting.
Technical data include your internet protocol (IP) address, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access this website.
Your profile includes information such as your username and password, preferences, feedback and survey responses, as well as your submitted cases to the International LDTL Registry - LDLTregistry.org or any other studies organized by LDLTregistry.org.
Marketing data include your preferences in receiving emails from us; communication preferences; responses and actions in relation to your use of our services.
We may aggregate anonymous data such as statistical or demographic data for any purpose. Anonymous data are data that do not identify you as an individual. Aggregated data may be derived from your personal data but are not considered personal information in law because they do not reveal your identity.
For example, we may aggregate profile data to assess interest in the International LDTL Registry - LDLTregistry.org or any other studies organized by LDLTregistry.org.
However, if we combine or connect aggregated data with your personal information so that it can identify you in any way, we treat the combined data as personal information and it will be used in accordance with this privacy notice.
2. Special personal information
We will be not collecting any special personal information such as data about your race or ethnicity, religious or philosophical beliefs, sex life, sexual orientation, political opinions, trade union membership, information about your health and genetic and biometric data.
3. If you do not provide personal information we need
Where we need to collect personal data by law, or under the terms of a contract / agreement we have with you, and you fail to provide that data when requested, we may not be able to perform that contract. In that case, we may have to stop providing a service to you. If so, we will notify you of this at the time.
4. The bases on which we process information about you
The law requires us to determine under which of six defined bases we process different categories of your personal information, and to notify you of the basis for each category.
If a basis on which we process your personal information is no longer relevant then we shall immediately stop processing your data.
If the basis changes then if required by law we shall notify you of the change and of any new basis under which we have determined that we can continue to process your information.
5. Information we process because we have a contractual obligation with you
When you create an account on our website and agree to our terms and conditions, a contract is formed between you and us.
In order to carry out our obligations under that contract we must process the information you give us. Some of this information may be personal information.
We may use it in order to:
- verify your identity for security purposes
- provide you with our services
- provide you with suggestions and advice on studies, services and how to obtain the most from using our website
We process this information on the basis there is a contract between us, or that you have requested we use the information before we enter into a legal contract.
We shall continue to process this information until the contract between us ends or is terminated by either party under the terms of the contract (e.g. by requesting your account to be deleted).
6. Information we process with your consent
Through certain actions when otherwise there is no contractual relationship between us, such as when you browse our website or ask us to provide you more information about our studies, including our services, you provide your consent to us to process information that may be personal information.
By consenting with LDLTregistry.org terms and conditions, we may from time to time pass your name and contact information to selected associates whom we consider may provide services or products you would find useful.
We continue to process your information on this basis until you withdraw your consent or it can be reasonably assumed that your consent no longer exists.
You may withdraw your consent at any time by instructing us: admin@LDLTregistry.org. However, if you do so, you may not be able to use our website, our services or participate in studies further.
7. Information we process for the purposes of legitimate interests
We may process information on the basis there is a legitimate interest, either to you or to us, of doing so.
Where we process your information on this basis, we do after having given careful consideration to:
- whether the same objective could be achieved through other means
- whether processing (or not processing) might cause you harm
- whether you would expect us to process your data, and whether you would, in the round, consider it reasonable to do so
For example, we may process your data on this basis for the purposes of:
- record-keeping for the proper and necessary administration of our activities
- responding to unsolicited communication from you to which we believe you would expect a response
- protecting and asserting the legal rights of any party
- insuring against or obtaining professional advice that is required to manage risk
- protecting your interests where we believe we have a duty to do so
8. Information we process because we have a legal obligation
Sometimes, we must process your information in order to comply with a statutory obligation. For example, we may be required to give information to legal authorities if they so request or if they have the proper authorization such as a search warrant or court order. This may include your personal information.
9. Information provided on the understanding that it will be shared with a third party
Our website allows you to submit anonymized clinical cases with a view to that information being read through a publication, viewed through a presentation or used by other investigators for publication purposes.
Examples include fully anonymized raw data being:
- Posted in the internet
- Shared with other investigators for publication purposes
- Shared with the industry for research and development or commercial purposes (e.g. pharmaceutical company)
We do store it, and we reserve a right to use it in the future in any way we decide.
Once your information enters the public domain, we have no control over what any individual third party may do with it. We accept no responsibility for their actions at any time.
Provided your request is reasonable and there is no legal basis for us to retain it, then at our discretion we may agree to your request to delete information that you have submitted. You can make a request by contacting us at admin@LDLTregistry.org.
10. Complaints regarding content on our website
Our website is also a publishing medium. Anyone relevant may register and then publish information about himself, herself or some other person in certain areas, such as forums.
We attempt to moderate user generated content, but we are not always able to do so as soon as that content is published.
If you complain about any of the content on our website, we shall investigate your complaint.
If we feel it is justified or if we believe the law requires us to do so, we shall remove the content while we investigate.
Free speech is a fundamental right, so we have to make a judgment as to whose right will be obstructed: yours, or that of the person who posted the content that offends you.
If we think your complaint is vexatious or without any basis, we shall not correspond with you about it.
11. Information relating to your method of payment in cases of donations
Bank account details:
We store information about your bank account when you first provide it to us for a donation. We store it to help us prevent fraud.
Online debit/credit card payment information:
Debit / credit card payment information is never taken by us or transferred to us either through our website or otherwise. Our colleagues and contractors never have access to it.
At the point of payment, you are transferred to a secure page on another reputable payment service provider. That page may be branded to look like a page on our website, but it is not controlled by us.
12. Job application, employment or committee membership
If you send us information in connection with a job application, employment or becoming a member in one of our committees, we may keep it for up to three years in case we decide to contact you at a later date.
If we employ you or if you become a member of one of our committees, we collect information about you and your work from time to time throughout the period of your employment / collaboration. This information will be used only for purposes directly relevant to your employment / collaboration. After your employment / collaboration has ended, we will keep your file for six years before destroying or deleting it.
13. Communicating with us
When you contact us, whether by telephone, through our website or by email, we collect the data you have given to us in order to reply with the information you need.
We record your request and our reply in order to increase the efficiency of our services.
We keep personally identifiable information associated with your message, such as your name and email address so as to be able to track our communications with you to provide a high quality service.
When we receive a complaint, we record all the information you have given to us.
We use that information to resolve your complaint.
If your complaint reasonably requires us to contact some other person, we may decide to give to that other person some of the information contained in your complaint. We do this as infrequently as possible, but it is a matter for our sole discretion as to whether we do give information, and if we do, what that information is.
We may also compile statistics showing information obtained from this source to assess the level of service we provide, but not in a way that could identify you or any other person.
15. Affiliate and collaborative information
This is information given to us by you in your capacity as an affiliate of us or as a collaborator (e.g. the names and contact details of your colleagues or collaborators. It allows us to recognize colleagues that you have referred to us, and to acknowledge such referrals. The information is not used for any other purpose.
We undertake to preserve the confidentiality of the information and of the terms of our relationship. We expect any affiliate or collaborator to agree to reciprocate this policy.
Cookies are small text files that are placed on your computer's hard drive by your web browser when you visit any website. They allow information gathered on one web page to be stored until it is needed for use on another, allowing a website to provide you with a personalized experience and the website owner with statistics about how you use the website so that it can be improved.
Some cookies may last for a defined period of time, such as one day or until you close your browser. Others last indefinitely.
Your web browser should allow you to delete any you choose. It also should allow you to prevent or limit their use.
- track how you use our website
- to record whether you have seen specific messages we display on our website
- to keep you signed in our site
- to record your case submission on our site while you complete them
17. Personal identifiers from your browsing activity
Requests by your web browser to our servers for web pages and other content on our website are recorded.
We record information such as your geographical location, your Internet service provider and your IP address. We also record information about the software you are using to browse our website, such as the type of computer or device and the screen resolution.
We use this information in aggregate to assess the popularity of the webpages on our website and how we perform in providing content to you.
If combined with other information we know about you from previous visits, the data possibly could be used to identify you personally, even if you are not signed in to our website.
18. Our use of re-marketing
Re-marketing involves placing a cookie on your computer when you browse our website in order to be able to serve to you an advert for our services when you visit some other website.
19. Information we obtain from third parties
Although we do not disclose your personal information to any third party (except as set out in this notice), we sometimes receive data that is indirectly made up from your personal information from third parties whose services we use.
20. Third party advertising on our website
Third parties may advertise on our website. In doing so, those parties, their agents or other companies working for them may use technology that automatically collects information about you when their advertisement is displayed on our website.
We do not have control over these technologies or the data that these parties obtain. Accordingly, this privacy notice does not cover the information practices of these third parties.
21. Credit reference
To assist in combating fraud, we share information with credit reference agencies, so far as it relates to clients or customers who instruct their credit card issuer to cancel payment to us without having first provided an acceptable reason to us and given us the opportunity to refund their money.
22. Data may be processed outside the European Union
Our websites are hosted in servers located in the United States of America.
We may also use outsourced services in countries outside the United States of America or the European Union from time to time in other aspects of our business.
Accordingly, data obtained within the UK or any other country could be processed outside the European Union.
We use the following safeguards with respect to data transferred outside the European Union:
we comply with a code of conduct approved by a supervisory authority in the European Union (ICO).
we are certified under an approved certification mechanism as provided for in the Act (ICO).
23. Your duty to inform us of changes
It is important that the personal data we hold about you is accurate and current. Please keep us informed if your personal data changes. You may also update your personal information by accessing and editing your account at our website.
24. Access to your personal information
At any time you may review or update personally identifiable information that we hold about you, by signing in to your account on our website.
To obtain a copy of any information that is not provided on our website you should contact us to make that request.
After receiving the request, we will tell you when we expect to provide you with the information.
25. Removal of your information
If you wish us to remove personally identifiable information from our website, you should contact us to make your request. This may limit the service we can provide to you or any future collaborations.
26. Verification of your information
When we receive any request to access, edit or delete personal identifiable information we shall first take reasonable steps to verify your identity before granting you access or otherwise taking any action. This is important to safeguard your information.
27. Use of site by children
We do not provide services for children, nor do we market to children. If you are under 18, you may use our website only with consent from a parent or guardian.
28. Encryption of data sent between us
We use Secure Sockets Layer (SSL) certificates to verify our identity to your browser and to encrypt any data you give us.
Whenever information is transferred between us, you can check that it is done so using SSL by looking for a closed padlock symbol or other trust mark in your browser’s URL bar or toolbar.
29. How you can complain
If you are in any way dissatisfied about how we process your personal information, you have a right to lodge a complaint with the Information Commissioner's Office (ICO). This can be done at https://ico.org.uk/make-a-complaint/. We would, however, appreciate the opportunity to talk to you about your concern before you approach the ICO.
30. Retention period for personal data
Except as otherwise mentioned in this privacy notice, we keep your personal information only for as long as required by us:
- to provide you with the services such as the collaborative studies you have requested;
- to comply with other law, including for the period demanded by our tax authorities;
- to support a claim or defence in court.
31. Compliance with the law
However, ultimately it is your choice as to whether you wish to use our website and to collaborate with us.
We may update this privacy notice from time to time as necessary. The terms that apply to you are those posted here on our website on the day you use our website. We advise you to print a copy for your records.
33. Additional terms and conditions
If you agree to participate in any study conducted by LDLTregistry.org you also agree with the terms and conditions stated in each study protocol, e.g. https://LDLTregistry.org/protocol
Study protocols typically include terms and conditions regarding:
- the need for application of for ethics and other regulatory approvals
- eligibility criteria
- the accuracy of data submitted
- data ownership
- data monitoring and auditing
- access to data and dissemination policy
- declaration of interests
- publication authorship rules
This Privacy Notice was prepared by Andrew Taylor and Net Lawman Ltd and modified by us.