TeamUp For Dementia Research & Your Privacy
We take your privacy seriously. The Alzheimer Society of Ireland (ASI) created TeamUp for Dementia Research in line with current data protection laws and requirements. At the outset, The ASI conducted a Data Protection Impact Assessment (DPIA) to look at how we can minimise any potential risks to data protection. Although not legally required in the context of Article 35 GDPR, nevertheless The ASI wished to ensure there was a full examination of any risks potentially posed to the data of individuals. This DPIA was submitted to the Data Protection Commission in 2019 and the DPC provided helpful feedback that The ASI incorporated into project plans.
The ASI will continue to update the Data Protection Commission as the need arises.
You can read the full text of the TeamUp For Dementia Research Data Protection Impact Assessment HERE.
The ASI has created a TeamUp For Dementia Research Data Protection Statement which you can read HERE
Frequently Asked Questions
In this section we have tried to anticipate data protection queries or concerns you may have. If we have not addressed your query please contact the TeamUp For Dementia Research coordinator listed below.
Withdrawing From TeamUp For Dementia Research
For the Team Up For Dementia Research project, The ASI processes your data on the basis of consent. Therefore you are free to withdraw your personal information at any time.
If you withdraw from TeamUp For Dementia Research:
- We will remove all of your personal information from TeamUp For Dementia Research.
- You will not be contacted about any further studies on TeamUp For Dementia Research.
- You will not receive the TeamUp For Dementia Research Newsletter (unless you wish to continue receiving it)
- Withdrawing from TeamUp For Dementia Research will not affect any existing research studies you have chosen to join or the standard of healthcare you receive
To withdraw contact us by e-mail, post or phone.
Post: Laura O’Philbin, The Alzheimer Society of Ireland, Temple Road, Blackrock, Co. Dublin
Phone: Laura O’Philbin on 085 871 6533
The ASI will automatically withdraw your personal data from TeamUp For Dementia Research in the event that a TeamUp For Dementia Research member becomes uncontactable and it is not possible to verify that they continue to consent to being a member after 12 months. Their information will be removed from TeamUp For Dementia Research following three attempts over four weeks to contact them.
How The ASI collect your data
There are two ways The ASI can collect your data for this project. You can choose what suits you best:
- Over the phone with a member of The ASI Research Team
- Online by completing two digital forms.
Signing Up Online
If you choose to sign up for TeamUp For Dementia Research online, we will ask you to complete two forms which are sent as secure links to the email address you provide. We divide up the information into two forms for data security reasons. We do this using Qualtrics Software.
What is Qualtrics?
Qualtrics is a survey software that The Alzheimer Society of Ireland Research Team uses. We reviewed various softwares and felt Qualtrics is the most secure. We pay to use this software. To read the Qualtrics Security Statement Click HERE.
Why are there two forms?
We are collecting sensitive personal data from you using these digital forms. Qualtrics is a highly secure survey tool with several security certifications. However, we want to make sure your information is as secure as possible. By collecting your data using two forms it means that your contact details and health information can’t be tied together in case there was a breach of Qualtrics software.
What happens after I submit the form?
Within 48 hours of completing the forms all of your information will be removed from Qualtrics software and only linked together when it is stored in our ring-fenced database. This database is hosted on Salesforce.
Consenting to your data being processed
When you sign up to TeamUp For Dementia Research, you are consenting to being contacted and informed about various opportunities to become involved in dementia related research. You are not consenting to take part in any specific research study and The ASI does not further share your data without your permission.
When you sign up for TeamUp For Dementia Research, The ASI will ask for your consent to:
- Collect your personal data for TeamUp For Dementia Research and enter it into the secure TeamUp For Dementia Research database.
- Use this personal data to check if you are eligible to take part in specific research studies (e.g. screening and matching). You are never automatically enrolled in any study.
- Contact you when an opportunity to take part in research arises to tell you about this opportunity
- Give you the option, for your convenience, of securely transferring your contact details to the relevant research team carrying out the study that you wish to engage with. You can also choose to contact the relevant research team directly yourself.
- Send you a digital newsletter 4-6 times per year updating you on dementia research.
Contact The Alzheimer Society Of Ireland's Data Protection Officer
The ASI has a Data Protection Officer that can assist you with detailed queries that may arise.
You can contact:
Address: DPO, The Alzheimer Society of Ireland, National Office, Temple Road,
Blackrock, Co. Dublin.