The BASELINE Birth Cohort study is Ireland’s opportunity to establish a longitudinal birth cohort with the potential to answer important questions in the study of diseases in early life, later childhood and beyond. It has the potential to identify risk factors for common disorders such as diabetes, eczema, and asthma. This study has the potential to transform the landscape of paediatric research in Ireland.
In 2019/2020 reconsenting of the cohort was undertaken where all parents of participants were sent an updated GDPR compliant consent/assent form and asked to complete and send back to the centre. Approximately 634 replied positively and 25 requested either their data to be removed, their samples to be removed or both, therefore approximately 660 (30%) replied. The INFANT centre continues to store and analyse data and samples from participants who did not reconsent to the BASELINE study as a consent declaration was obtained from the Health Research Consent Declaration Committee (HRCDC) in 2021 which permits the continued storage and processing specifically for the BASELINE study and related research in the absence of reconsenting the participants. The Health Research Regulation (HRR) is also adhered to.
Biosamples and personal data from the study continue to be processed for the purpose of the BASELINE study and are stored securely for future related research which can only be undertaken subject to Ethics Committee approval.
We are continuing to carry out important secondary data analysis of the stored data and biosamples collected from the BASELINE cohort, for example data from the BASELINE study is now being used in the IDEA study.
If you participated in the Baseline Study, you can find out more about your rights in relation to your data here.