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Privacy Notice for The Irish Longitudinal Study on Ageing (TILDA)

Introduction

This is a statement of the practices of The Irish Longitudinal Study on Ageing (TILDA), Trinity College Dublin, The University of Dublin (the "University") of College Green, Dublin 2, Ireland regarding the use of personal data shared with us for this longitudinal study and the steps taken by the University to protect your privacy.

The University fully respects your right to privacy and actively seeks to protect the privacy rights of those who share information with the University. Any personal information which you volunteer to the University will be treated with the highest standards of security and confidentiality, in accordance with Irish and European Data Protection legislation.

The privacy notice explains the following:

  • How we collect and use your personal data
  • The purpose and legal basis for collecting your personal data
  • How we store and secure personal data
  • Details of third parties with whom we share personal data
  • What are your rights

How we collect your personal data?

The Irish Longitudinal Study on Ageing (TILDA), based in Trinity College Dublin (TCD), is a large-scale, nationally representative study of community-dwelling adults aged 50 years and over in Ireland. Since 2006, it has received funding from the Department of Health, the Atlantic Philanthropies and Irish Life plc to collect information that will provide an evidence base from which Ireland can plan health, medical, social and economic policies and practices. TILDA, in collaboration with TCD, has conducted a data protection impact assessment to identify the level of risk associated with this social, health and economic research and to take the necessary steps to ensure participant confidentiality.

The data we collect from you will be used by the University in accordance with the purposes outlined in this privacy notice. We will collect your data in the following manner:

  • Computer Assisted Personal Interview (CAPI) – a trained interviewer will visit you in your home and complete an interview with you. The information collected will be entered directly into the interviewer’s computer. They will also ask you to complete some physical tests and some written cognitive tests. [Please note during 2022, all CAPI interviews will now be a CATI style interview due to COVID-19]

  • Computer Assisted Telephone Interview (CATI) – a trained interviewer will conduct a telephone interview with you. The information collected will be entered directly into the interviewer’s computer.

  • Self-completion questionnaire (SCQ) – the interviewer will leave a booklet with you for you to complete in your own time. Alternatively, this may be sent via the post to you. We ask that you return the completed booklet to us in the stamped addressed envelope provided. A special SCQ which focuses primarily on COVID-19 has also been conducted in 2021.

  • During the interview, you will be assigned a unique TILDA identifier made up of five numbers and letters. This identifier is used instead of your name and other contact details to maintain the confidentiality of the information you provide.

  • Health assessment – at every second or third wave of data collection, you will be invited to take part in a centre-based or a home-based health assessment delivered by a trained research nurse. This will include assessments of cardiovascular function including blood pressure and an ECG, cognitive function, mobility, grip strength, heel bone ultrasound , sensory function including vison and hearing tests and retinal photographs, anthropometry (Height, weight, waist and hip circumference) , physical activity monitoring, oral health assessments, brain magnetic resonance imaging (MRI). A selection of biological samples is collected during each health assessment. These may include blood (full blood count and cholesterol), hair, stool or saliva samples. The information leaflet you receive about the study will describe which samples we plan to collect at each health assessment wave. You can choose to provide biological samples or not at each health assessment wave. [Please note during 2022, there will be no vision (including retinal photography) or hearing tests conducted. During 2022, there will be no MRI tests conducted. ]
  • The full privacy notice is available here.