Privacy Notice

Privacy Notice

When you use our services, you’re trusting us with your information. We work hard to protect your personal data, and we support your rights to control how we use it.

This privacy notice tells you how we collect and process your personal data on our website and related sites, including LDN Research Trust conference sites and The policy covers information you give us when you:

  • Sign up for our newsletters
  • Create an account
  • Make a purchase or donation
  • Participate in an event
  • Ask to have your data listed
  • Participate in an interview, video, or radio show
  • Publish or request information related to LDN
  • Use the web version of health tracker application, myLDN
  • Communicate with us by email or other means
  • Visit our websites

You must be 14 or older to give us your data in any form.

Why we collect your data

We collect your information so we can:

  • Provide our services
  • Maintain and improve our services
  • Develop new services
  • Measure our performance
  • Communicate with you
  • Provide a safe and reliable source of information

How we collect your data

We collect and process data you give us, data we collect as you use our services, and data that is from third parties and public sources.

1. Data you provide to us

  • When you sign up to a mailing list, you give us your name, email address and preferences for receiving communications.
  • When you register on our website you give us your email and password.
  • When you pay us for something, we receive your name, email, address and other details provided to us by our electronic payment services. If you pay by check or wire transfer we receive your name and other banking information provided on the check or bank documentation.
  • If you participate in an event, you provide us your name, email, address, purchase details and payment details.
  • If you ask us to list your involvement with LDN in our directories or Virtual Expo, you give us your contact information, name and location. You may also give us your logo, website link, professional specialty, certifications, history and other details.
  • If you participate in an interview, video or radio show, or present at a conference, you give us your name and location. You may give us a picture of you, and we may make a video or audio recording with your consent. During these events you may choose to provide details about your history, including your medical information, certifications, specialty or professional knowledge. You may also provide us a copy of your presentation materials with the rights to distribute them.
  • If you communicate with us directly, whether by email, website forms such as the contact page, “Ask about LDN” or volunteer application, phone, facsimile or text, you give us your name, contact information and the content of the communication.
  • If you publish research on the Internet about LDN, we collect your name, links to your research and other data that may be provided on the publisher’s website, such as your professional specialty and contact information.
  • If you use the website version of our myLDN health tracker, you give us your name, email and health information.

If you choose to use the myLDN health tracker you may choose to give us sensitive data, which includes information about health conditions, your use of medications, past and current health status and other data you choose to reveal including pain, disability, mood, fatigue, sleep, diet, height, weight, physical and social activities, etc.

We require your explicit consent to collect your sensitive data. When you register to use the application you will be required to confirm your consent for us to process your sensitive data.

2. Data we collect as you use our services

When you visit our website, our systems automatically collect:

  • Technical data about your computer and connection including your login data, Internet protocol address, browser type and version, browser plug-in types and versions, time zone setting and location, operating system and platform, and other technology on the devices you use to access the site. This data comes from server logs, cookies and similar technology. It lets us optimize the site for our users’ technology and helps us keep the site secure from known malicious hackers. Our cookie policy provides more details about their use.
  • Usage data that tells us how you use our website, products and services so we can focus our efforts on what you most want.

3. Data from third parties that is a by-product of using our services

We may receive technical data from Google or other analytics providers. We may also receive contact, financial and transaction data from payment services such as PayPal and delivery services.

4. Data from public sources

We may collect your name, contact information, profile and posts from Internet searches and social media including LinkedIn, FaceBook and Twitter. We may also collect your name, contact information, professional background and public posts from sites related to our mission such as, based in the United States, and, based in the United Kingdom.

When we use your data

We only use your information when there is a lawful basis. The lawful basis for using your personal data is one or more of the following:

  • With your consent
  • To fulfil a contract between us
  • Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests
  • To comply with legal or regulatory obligations


Consent is the lawful basis for processing your personal data when:

  • You ask us to send newsletters and marketing communications to you via email
  • You create a login on  our website
  • You voluntarily participate in an interview, video, radio show or other recording
  • You request to be listed on  our website
  • You register for the myLDN app

You can withdraw consent at any time. To unsubscribe from newsletters and marketing communications use the unsubscribe link on any email from us. You can delete your account from myLDN in the app settings. Doing so will remove all personally identifiable data and retain anonymized data for research. You can email us at to remove consent from any of the other uses listed above.

You will receive marketing communications from us if you requested information from us or made a purchase and you have not opted out of receiving marketing communications. 

We will get your express opt-in consent before we share your personal data with any third party for their marketing purposes.

Where you opt out of receiving our marketing communications, this does not affect the personal data you provided to us as a result of:

  • purchase of a product, service, ticket, membership
  • support of a purchase
  • donation
  • other financial transaction
  • other interaction with regulatory requirements for data retention


Fulfilling a contract is the lawful basis for processing your information when:

  • You sign up for an event we offer
  • You become a customer or donor
  • We process your purchase or donation
  • We deliver what we sold
  • You sign up for a prize draw, competition or complete a survey

If we are required to collect personal data by under the terms of the contract between us or by law and you don't provide us the data, we may not be able to perform the contract (for example, to deliver goods or services to you). We may have to cancel a product or service you have ordered but if we do, we will notify you at the time.

Legitimate Interests

Legitimate interests is the lawful basis for processing in specific circumstances. We use legitimate interests to process your information:

  • When you conduct any financial transaction with us, including registering for or contributing to an event, making a purchase or donation, or when we buy something from you. Processing your information is necessary for our legitimate interests to collect monies owed us or to pay our obligations.
  • When you ask for or provide information about LDN, including when you do an interview, video, radio show or conference presentation with us, post your pharmacy or provider information on our website, publish papers about LDN or use or website forms to ask questions. Processing your information is necessary for our legitimate interests to provide information to the public about LDN.
  • For research purposes when you use myLDN app. All personally identifiable information is removed from app data before researchers are able to access it. Processing your personal data is necessary for our legitimate interests to enable research on LDN use.
  • When you apply to volunteer or provide IT or administrative services. Processing your personal data is necessary for our legitimate interests to operate our business.
  • When you complete a survey or leave a review. We have a legitimate interest to study what services provide the most value to our users.
  • When we collect personal data for troubleshooting, data analysis, testing, system maintenance, support, reporting and hosting data. Processing your personal data is necessary for our legitimate interests for running our business, providing IT and administration services, network security, to prevent fraud, and in the context of a business reorganization or group restructuring.
  • When we use data analytics to improve our website, products/services, marketing, customer relationships and experiences. Using your personal data is necessary for our legitimate interests to keep our site updated and relevant, to develop our business, to inform our marketing strategy and to define the types of customers for our products and services.
  • To make suggestions and recommendations to you about goods or services that may be of interest to you. Processing your data is necessary for our legitimate interests to develop our products/services and grow our business.
  • When you sign up for a prize draw or competition. Processing your data is necessary for our legitimate interests to grow our business.

Some processing has more than one lawful ground. Please contact us at if you need details where more than one ground is stated for a given purpose.

Anonymized aggregated data

We may anonymize and aggregate data for analysis or research. Anonymized data does not reveal your identity and is not personal data. For instance, we may calculate the percentage of website users that use a specific feature. If we link the aggregated data with data that can identify you, then it is treated as personal data.

Change in purpose for data use

We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If we need to use your personal data for a purpose unrelated to the purpose for which we collected the data, we will notify you and we will explain the legal ground of processing.

We may process your personal data without your knowledge or consent where this is required or permitted by law.

Who receives your data

Our service providers

We use services provided by other companies to run our business. These services may include fulfilling orders, processing credit card payments, delivering packages, providing customer service and marketing assistance, performing business and sales analysis, supporting our website functionality, and supporting contests, sweepstakes, surveys and other features offered through our website. Our third-party service providers may have access to personal information needed to perform their functions but are not permitted to share or use such information for any other purposes. They are required to respect the security of your personal data and treat it lawfully. We only allow third parties to process your information for specified purposes and only according to our instructions.

Our third-party service providers, location of data storage and purpose

  • MailChimp (United States) receives subscriber data and processes mailings
  • Vimeo (United States) stores videos and text descriptions and provides video playback
  • Box (United States) provides secure computer file storage
  • (United Kingdom) archives our interview videos
  • Google (United States) provides encrypted email, secure file sharing and technical data
  • PayPal (United States) processes payments and provides receipts and reports
  • OnePageCRM (United States) processes our customer data
  • (United Kingdom) hosts our radio show recordings
  • Microsoft (United Kingdom) provides secure storage for the myLDN health tracker app

Other data recipients

  • Authorized medical professionals may receive your data so they can answer your questions and respond to requests for consultation. These professionals may receive sensitive data if provided by you.
  • Authorized volunteers who have signed confidentiality and data protection agreements
  • Professional advisers including lawyers, bankers, auditors and insurers who provide consultancy, banking, legal, insurance and accounting services
  • HM Revenue & Customs, regulators and other authorities based in the United Kingdom and other relevant jurisdictions who require reporting of processing activities in certain circumstances
  • Third parties to whom we sell, transfer, or merge parts of our business or our assets.

We require all data recipients to respect the security of your personal data and to treat it in accordance with the law. They may process your personal data for only for the specified purposes and in accordance with our instructions.

How we protect your data

Data transfers

Countries outside of the European Economic Area (EEA) do not always offer the same levels of protection to your personal data, so European law has prohibited transfers of personal data outside of the EEA unless the transfer meets certain criteria.

Many of our third parties service providers may transfer and process your data outside the EEA. We do our best to ensure your data stays secure by requiring at least one of the following safeguards:

  • We will only transfer your personal data to countries that have been deemed to provide an adequate level of protection for personal data by the European Commission; or
  • Where we use certain service providers, we may use specific contracts or codes of conduct or certification mechanisms approved by the European Commission which give personal data the same protection it has in Europe; or
  • Where we use providers based in the United States, we may transfer data to them if they are part of the EU-US Privacy Shield which requires them to provide similar protection to personal data shared between the Europe and the US.

If none of the safeguards are available, we will ask you for explicit consent to allow the transfer. You will have the right to withdraw this consent at any time.

Data security

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those employees, volunteers, contractors and other third parties who have a business need to know such data. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

We have procedures for responding to a suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

How long we keep your data

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

By law we have to keep basic information about our customers (including contact, identity, financial and transaction data) for six years after they cease being customers for tax purposes.

In some circumstances we may anonymise your personal data (so that it can no longer be associated with you) for research or statistical purposes. If we do so, we may use this information indefinitely without further notice to you.

Controlling your data

Your legal rights

Under certain circumstances, you have the right to make requests regarding the information we collect and how it's used. Under data protection laws you have the right to:

  • Request access to your personal data.Request correction of your personal data.
  • Request erasure of your personal data.
  • Object to processing of your personal data.
  • Request restriction of processing your personal data.
  • Request transfer of your personal data.
  • Right to withdraw consent.

You can see more about these rights at ICO

Exercising your rights

1. Send us  your request in writing

If you wish to exercise any of the rights set out above, please email us at with your specific request, or send by post to LDN Research Trust, PO Box 1083, Buxton, Norwich NR10 5WY.

2. Verify your identity

Before we can provide access to or take action on your data we must verify your identity. We will request specific information from you to help us confirm your identity. This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it.

3. Provide additional information

We may contact you to ask for more information about your request to speed up our response.

What to expect

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive. Alternatively, we may refuse to comply with your request in these circumstances.

We try to respond to all legitimate requests within one month. Occasionally it may take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.

It is very important that your information is accurate. Please let us know at any time if your personal information changes. If you receive data from us, please correct any errors so we can keep our systems up to date.

Some requests cannot be accommodated. If this happens, we will provide a reason.

You have the right to complain to the Information Commissioner's Office (ICO), the UK supervisory authority for data protection issues ( We should be grateful if you would contact us first if you do have a complaint so that we can try to resolve it for you.

Other ways to control your data

Third-party links

Our website has links to other sites. For instance, when you click a link to a published paper you are taken to the site where the paper was published. We do not control these third-party websites, we're not responsible for their privacy statements, and this privacy policy does not apply to that site. Clicking on those links or enabling those connections may allow others to collect or share data about you. When you leave our website, we encourage you to read the privacy notice of every website you visit.


You can set your browser to refuse all or some browser cookies, or to alert you when websites set or access cookies. If you disable or refuse cookies, please note that some parts of this website may become inaccessible or not function properly. For more information about the cookies we use, please see our cookie policy.               

Data you voluntarily disclose to the public

We may provide areas on our websites where you can post information about yourself and communicate with others; upload content (e.g. pictures, videos, audio files, etc.); and post comments or reviews of content found on the website. Such postings are governed by our Terms and Conditions. When you voluntarily disclose personal data, including sensitive data, on publicly-viewable web pages, that information will be publicly available and can be viewed, collected and used by others. We cannot control what viewers may do with the information you post, so we encourage you to exercise caution with respect to posting your personal information.

Contacting us

We have appointed a Data Protection Officer who is in charge of privacy related matters for us. If you have any questions about this privacy notice, please contact our Data Protection Officer.

Full name of legal entity: LDN Research Trust

Data Protection Officer: Dana Cook

Email address:

Postal address: LDN Research Trust - PO Box 1083, Buxton, Norwich NR10 5WY 

If you are not happy with any aspect of how we collect and use your data, you have the right to complain to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues ( We should be grateful if you would contact us first if you do have a complaint so that we can try to resolve it for you.