The BASELINE 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.
During the BASELINE study the team used several channels of communication to inform the public about its research. A Facebook page for the study consistently updated the public about how the study was progressing, reporting on research and media attention the study attracted.
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.