EJS ACT-PD respects your privacy and is committed to protecting your personal data.
Please read this Privacy Notice carefully – it describes why and how we collect and use personal data and provides information about your rights. It applies to personal data provided to us, both by individuals themselves or by third parties.
We keep this Privacy Notice under regular review. It was last updated on July 2022.
We only receive or store personal information from individuals visiting the website if they have contacted us using the ‘contact us’ page and provided this information. Similarly, we only send communications to those who have provided their contact details when getting in touch with us. Your personal information may include your name, email address, and professional role and organisation, dependent on what you provided in the form.
If you would like to contact us then please use the button below.
What information we collect from you
We collect information in the following ways:
Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data). We only collect this information about you when you engage with us directly, by completing the ‘Contact us’ form.
This personal information may include:
- Your name and contact details;
- Your professional role and organisation;
- Any other personal data that you decide to share in the ‘message’ that is sent to us
Some of this information is optional, such as your professinal role and organisation. You can choose to contact us without sending this information if preferred, however we will require a name and email address in order to respond to you.
When we collect it as you use our WEBSITES OR APPS.
In addition, the type of device you’re using to access our website or apps and the settings on that device may provide us with information about your device, including what type of device it is, what specific device you have, what operating system you’re using, what your device settings are, and why a crash has happened. Your device manufacturer or operating system provider will have more details about what information your device makes available to us.
What personal data we collect and how do we use it.
Personal information is any information that can be used to identify you. For example, it can include information such as your name, date of birth, email address, postal address, telephone number and credit/debit card details, as well as information relating to your health or personal circumstances.
Data protection law recognises that certain categories of personal information are more sensitive. This is known as special categories and covers the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person’s sex life or sexual orientation shall be prohibited. We would only collect sensitive personal information where there is a clear need to do so, to ascertain what services are relevant to you or to cater other support to you. Before collecting any sensitive personal information from you we will always make it clear to you what sensitive personal data we are collecting and why. We will also ask for your consent to store and retain this data.
We will only use your personal data when the law allows us to. Most commonly, we will use your personal data in the following circumstances:
- To help you with your query / request. Depending on the circumstances, this may include special category personal data. Here, the processing of your information is carried out on the basis of your explicit consent;Where the processing is based on your consent, you have the right to withdraw your consent at any time by contacting us using the details set out below. Please note that this will not affect the lawfulness of processing based on consent before its withdraw.
We may also use anonymised data, meaning data from which you cannot be identified, for the purposes of:
- Service evaluation;
- Education and research; or
- Fundraising and promotional purposes.
Anonymised data may also be used in published reports or journals and at conferences.
With your consent from time to time we will contact you to let you know about the progress we are making, other research studies in Parkinson’s or to ask if you would like to be involved. Occasionally, we may include information from partner organisations or organisations that support us in these communications. We will only contact you using the contact details you have provided when initially contacting us, and only if you consented to this at that time. If you don’t want to hear from us, that’s fine. Just let us know when you provide your data or get in touch via our Contact Us page.
We do not sell or share personal details to third parties for the purposes of marketing. If we run an event in partnership with another named organisation your contact details will not be shared but names may be provided for administrative purposes e.g. registration/security. We will be very clear what will happen to your data when you register.
How we keep your data safe and who has access to it.
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. We have established procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so. We ensure that there are appropriate technical controls in place to protect your personal details. For example, our website is fully compliant with GDPR.
Your personal data will be collected and processed primarily by staff involved with running the EJS ACT-PD Initiative. This may include staff from University College London and the University of Plymouth. Any data that is stored will always be done so on a secure, password-protected University server and only team members with permission will have access to this.
We may need to disclose your details if required to the police, regulatory bodies or legal advisors.
We will only ever share your data in other circumstances if we have your explicit and informed consent.
We do not transfer your personal data outside the European Economic Area (EEA).
Keeping your information up to date.
We really appreciate it if you let us know if your contact details change.
We keep your personal information only for as long as required to operate the service in accordance with legal requirements. Where your information is no longer required, we will ensure it is disposed of in a secure manner.
Your right to know what we know about you, make changes or ask us to stop using your data.
You have a right to ask us to stop processing your personal data, and if it’s not necessary for the purpose you provided it to us for (e.g. in relation to the EJS ACT-PD Initiative) we will do so. Please get in touch with us via the Contact Us page should you have any concerns.
You have a right to ask for a copy of the information we hold about you, and we will endeavour to provide you with information within 1 month from your request. If there are any discrepancies in the information we provide, please let us know and we will correct them.
If you want to access your information, send a description of the information you want to see and proof of your identity by post. We do not accept these requests by email so we can ensure that we only provide personal data to the right person.
If you have any questions please send these to us via the Contact Us page and for further information see the Information Commissioner’s guidance here.
Changes to this policy
If you have any questions, comments or suggestions, please let us know by post or via our Contact Us page.