As part of the NIHR's measures to ensure fair and equal access to research, the Year of Birth (YOB) project has recently been launched nationwide. Data will be collected for portfolio studies only. For more information and guidance please see here.
LCRNs have nominated YOB project representatives to address any local queries regarding provision of this data. List of representatives can be found here.
GDPR concerns? The NIHR CRN governance team and the Chief Information and Technology Officer have reviewed the YOB project and issued this statement to confirm there are no GDPR concerns as the data collected does not include any identifiable information.
Frequency of data collection: NIHR is asking trusts to share the data on a quarterly basis. Dates for FY2022/23 shown below.
How YOB data is captured? Siteline platform will be used to collect the Year of Birth data for relevant research studies from Thames Valley & South Midlands. Please provide the Year of Birth (if available) for each participant added on to Siteline.
Do I need to send the data? No. Data will be extracted from Siteline by support team and sent to the regional Year of Birth project representative for each data cut off period on your behalf.
Exceptions: Year of Birth needn't be collected in all cases, in particular:
● Studies in rare disease where due to the small sample size / recruits therefore is the potential of participants being identified.
● Questionnaire studies and carers recruited to studies where it may not be possible to collect the YoB/age for those recruited.
