Available Data

Comprehensive and detailed information has been collected from the mothers (Gen1) in early pregnancy and children born into the Raine Study (Gen2) since birth. More recently, data from Gen2 grandparents (Gen0) and Gen2 offspring (Gen3) have also been collected. 

This includes questionnaire data, clinical assessment information and biological sample results. Stored biological samples include antenatal blood, cord blood, placenta, milk teeth, blood, saliva, urine and DNA.

The Raine Study has multiple collected data over many different occasions (i.e. follow-ups). Each follow-up is differentiated by a number, which is reference to the average age of the Gen2 participants at the time of the study (e.g. Gen2-22 year follow-up refers to a follow-up undertaken with the Gen2 participants when they were 22 years old; the Gen1-26 year follow-up refers to a follow-up undertaken with the Gen1 participants when Gen2 participants were 26 years old).

Information has been collected from each generation throughout the last 30 years. Follow-ups of our Gen2 participants have been conducted before birth and at 1, 2, 3, 5, 8, 10, 14, 17, 18, 20, 22, 27 and 28 years of age. Their parents (Gen1) have provided some information at pre-natal and perinatal time points up and at every follow-up until Gen2 were 18 years of age. Gen1 has provided more extensive data at the Gen1-26 year follow-up, when parents completed their first exclusive follow-up. Limited information has been collected from Gen0 and Gen3 participants as part of sub-studies.

The Raine Study procedures for data handling:

Prior to gaining access to data, any researchers who will handle data for an approved project must be allocated ‘data handler’ status. This is done as part of the data access request in ROSS and confirmation of involvement as a data handler means that the researcher  agrees to the terms and conditions of data access, as stated in the Raine Study Researcher Engagement Policy. A data access request needs to be submitted and approved ROSS before the Raine Study staff will extract data and prepare for delivery to the data handlers.

The Raine Study shares data via secure platforms according to the project requirements. The data will be available to data handlers for download over a limited period of time. In most cases, datasets will be shared with data handlers via the Australia’s Academic and Research Network (AARNet). If AARNet is not appropriate for data sharing, the Raine Study staff can suggest alternative secure platforms.

Once data handlers have downloaded the data they are responsible for maintaining a high level of data security and confidentiality. If data needs to be shared between data handlers (within or across organisations), the same standards for secure data transfer are expected. Data cannot be shared with any other individuals (even in the same research team) unless they have been allocated data handler status.

In no circumstance should data be shared without protection or to team members that do not have data handler status.

The project’s lead investigator is responsible for:

  1. Returning all derived variables generated as part of the project, with variable descriptions and coding guides, in a timely manner.
  2. Retaining clear, accurate, secure and complete records of all research including research data and primary materials. This is required of all researchers as per the Australian Code for the Responsible Conduct of Research and the project ethics approval.

The Raine Study will maintain a record of data accessed by researchers and any derived data returned from an approved project.

To return derived data back to the Raine Study, we recommend the lead investigator and/or data handlers use AARNet or similar secure platforms, such as sharing a folder in their organisation’s secured drive or using Microsoft Teams. If you have any questions regarding data handling, please contact the Data and Biosamples Manager.

 

An overview of the information collected at the Raine Study follow-ups and the questionnaires and coding guides for the follow-up are available below:

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