This website is hosted, maintained and developed by some of the staff at the John Walton Muscular Dystrophy Research Centre (JWMDRC) who are part of the TREAT-NMD secretariat.
This page explains when and why we collect personal information about people who visit and interact with our website, how we use it and how we keep it secure.
We take great care with any information we receive from you and are constantly looking at ways we can improve what we do so we may change the content on this page from time to time. Please check this page occasionally to ensure that you’re happy with any changes. By using our website, you’re agreeing to be bound by our policy.
Who are we?
Staff based at the JWMDRC look after the TREAT-NMD website, its content and newsletter. The JWMDRC is part of the Institute of Translational and Clinical Research which is part of Newcastle University in the UK. We are based at the Centre for Life, Central Parkway, Newcastle upon Tyne, NE1 3BZ.
How do we collect information from you?
We obtain information about you, for example, when you contact us to tell us about an event or a job vacancy you would like advertising or if you sign up to receive one of our monthly newsletters, we need this information to be able to interact with you.
Like millions of other websites, we use Google Analytics to find out about where visitors to our website go to and where isn’t being visited so much.
What type of information is collected from you?
The personal information we collect includes your name, address, email address, IP address, and information regarding what pages are accessed and when.
If you sign up to our newsletter, we collect personal information including your name and email address.
If you sign up to become a TREAT-NMD member, we collect personal information including your name, email address, affiliation and affiliation address.
How is your information used?
We use (process) your information to:
to send you our monthly newsletter (if you have signed up for it)facilitate and maintain TREAT-NMD membership – this includes occasional emailensure our website is working correctly, is fit for purpose and is being seen by the outside worldif you get in touch with us with a question, event you might want listing etc. then we need to save details such as name and email address to enable us to get back in touch with you.
Our monthly newsletter is sent only to those people who have specifically signed up to receive it and each newsletter gives the reader the option to easily unsubscribe from receiving any more newsletters. To ensure that the newsletter is of high quality, topical and functional we are able to see which articles are most popular and have been clicked on the most. For this, we need to take note of your IP address. When a newsletter recipient unsubscribes from a newsletter we (as a matter of course) will delete their information from our newsletter system. This also deletes all other information about their interactions and the newsletters including IP address.
For those visitors (and organisations) who sign up to become members of the network we have to keep a minimal amount of contact information about you to allow us to maintain your membership. As part of the TREAT-NMD membership contract, members will be contacted only very occasionally using the email supplied to ensure their details are up to date and also about any extraordinary network business that we think needs special attention.
We will only contact members about directly related network matters and their membership.
We are happy to remove any member from our mailing lists who does not want to be contacted in this way please email firstname.lastname@example.org
When visitors sign up to become a member they are given the choice of whether they want their details (name and country) publishing on our website. We are happy to alter this choice at any time please contact us at email@example.com
The Google Analytics tracking information allows us to better understand the numbers and location of people visiting our site and what content they’re reading. This allows us to make better decisions about design and writing. Occasionally, we need to compile aggregate statistics about the number of visitors this site receives, pages visited and where they are from (geographically). Some basic aggregate statistical information is used to fulfil our reporting requirements to the European Commission but, no personally identifying data is ever included in this type of reporting. We also learn about the technology used to access our site, this is to ensure that the site will function correctly for our visitors.
All of our activity falls within the bounds of the Google Analytics Terms of Service.
We intend to remove each question, event requests etc. from our website once it has been dealt with and this will include accompanying contact details. Our sites are backed up on a rolling basis so we would anticipate that contact details once deleted from a site would fully be removed from our systems in about a week.
Who has access to your information?
The TREAT-NMD Secretariat are the only users (processors) that have access to your stored information whilst the TREAT-NMD’s web developer oversees the protection of the information stored on the database using procedures that are described below where we cover security precautions.
We will not sell or rent your information to third parties. We will not share your information with third parties for marketing purposes.
We really respect your choices and are happy to remove your personal information from our systems if you want us to.
If you would like us to look into this for you please contact firstname.lastname@example.org
If you want to unsubscribe from our newsletters the please visit: https://treat-nmd.org/about/newsletters/newsletter-unsubscribe/
How you can access and update your information
The accuracy of your information is important to us and you can always inform us of any changes to this at email@example.com so that we can update your information.
Security precautions in place to protect the loss, misuse or alteration of your information and protection of the overall website
When we receive information, we take steps to ensure that it is treated securely. We have a SSL certificate in place for this website. You can tell this by the presence of a small green padlock before the URL in the browser bar at the top of the screen. This means all information sent between your web browser and our web server is secure.
To ensure the functionality of our website is secure along with the information we hold on the server, we have installed specific security software. This software not only provides a firewall to all administrative areas but monitors activities of less scrupulous visitors whose aim is to gain access to areas of the site where they can install malicious code. Such visitors, once identified by where they have attempted to visit and also their activity, have their IP address blocked by our systems and this is also added to a blacklist of similar IP addresses.
We routinely monitor the security of our sites’ systems such as this. When available, we update all software to maximise security. As part of our security procedures we are in touch with the wider community of web security experts who raise awareness of any potential issues and offer valuable advice.
Our server, where all information is held, is located in the United Kingdom meaning all the data and information we store is held within the EU.
Use of ‘cookies’
It is possible to switch off cookies by setting your browser preferences. For more information on how to switch off cookies on your computer, visit our full cookies policy. Turning cookies of may result in a loss of functionality when using our website.
We want to make the TREAT-NMD website easy to use, reliable and most importantly relevant to you, our audience. To help us achieve this we sometimes have to place small amounts of information on your device, such as your computer or mobile phone. These include small files known as cookies. They cannot be used to identify you personally.
These pieces of information are used to improve services for you by, for example:
measuring how many people are using services, so they can be made easier to use and there’s enough capacity to ensure they are fastanalysing anonymised data to help us understand how you use the website and if we can improve the layout, navigation or content in any area of the site
To help us achieve this we use Google Analytics as part of our site. Typically these cookies begin with:
You are always in control of these files and can manage them yourself via the same web browser you are using to access this site. Please note: we do not use any cookies for any advertising-related or commercial purposes.
You can find out more information about the cookies on your machine here.
Links to other websites
In addition, if you linked to our website from a third-party site, we cannot be responsible for the privacy policies and practices of the owners and operators of that third-party site and recommend that you check the policy of that third-party site.
Review of this Policy
We keep this Policy under regular review. This Policy was last updated – 6th January 2020.