Key Documents for Public Access
[Section 1] Key publications
[Section 2] Organisational structure
[Section 3] Data access
[Section 4] Reports
The Raine Study has become a multigenerational study. The following nomenclature has been adopted to differentiate the different generations (Gen) of participants – the subscript and number always refer to the average age of the index participants (Gen 2) at the time of the study (e.g. Gen1_28 refers to a study undertaken on the parents when the index participants were 28 years old).
Gen1 Mothers and partners originally recruited into the study
Gen2 Raine Study participants “the kids”
Gen2_25 Questionnaire follow-up of the participants at age 25 years
Gen2_27 Full assessment follow-up of the participants at 27 years of age
Gen2_30 Next planned follow-up
Gen3 Offspring of the participants
PURPOSE OF THE RAINE STUDY
To improve human health and well-being by studying the life-course of a cohort of Western Australians from before birth onwards.
Section 1 KEY PUBLICATIONS
1.1 Original Lancet paper
1.1.1 Effects of frequent ultrasound during pregnancy: a randomised controlled trial. Newnham, Evans, Michael, Stanley, Landau. The Lancet, 1993 (>500 citations). This is the first publication from the Raine Study which is now the basis for international practice.
1.2 Nature papers
1.2.1 Rare and low-frequency coding variants alter human adult height. Marouli et al. Nature, 2017.
1.2.2 Genome-wide associations for birth weight and correlations with adult disease. Hirokoshi et al. Nature, 2016.
1.2.3 Directional dominance on stature and cognition in diverse human populations. Hoshi et al. Nature, 2015. These three recent papers reflect the contribution of the Raine study to international genetic consortia studies that require large sample sizes.
1.3 Cohort profile papers
1.3.1 Birth of a cohort – the first 20 years of the Raine study. McKnight, Newnham, Stanley, Mountain, Landau, Beilin, Puddey, Pennell, Mackey. Medical Journal of Australia, 2012. This paper provides a great history of the Raine Study and reviews issues such as the original idea, funding, governance, participant loss, and ethics.
1.3.2 Rationale, design and methods for the 22 year follow-up of the Western Australian Pregnancy Cohort (Raine) Study. Straker, Hall, Mountain, Howie, White, McArdle, Eastwood, et al. BMC Public Health, 2015. This paper serves as a reference for all studies using data from the most recent Gen_2 followup at 22 years.
1.3.3 Cohort Profile: The Western Australian Pregnancy Cohort (Raine) Study-Generation 2. Int J Epidemiol, 2017. This paper provides an overview and reviews issues such as cohort representativeness, measurements, key findings and publications and data access.
Section 2 ORGANISATIONAL STRUCTURE
2.2 Roles of key committees and senior positions including terms of references
The Raine Management Committee is to review and enable implementation of operational and science plans. The committee assumes overall responsibility to facilitate the effective management and operations of the Raine Study in the key areas of administrative and financial support. The Raine Management Committee ensures communication and coordination between Operational and Scientific components.
The Scientific Review Committee was established to provide high quality review of scientific projects and science strategy in relation to the utilisation of the longitudinal data andbiosamples provided by Raine Study participants.
The Translation Committee is to assist the Raine Study in translating its research findings into improved, evidence-based health policies practices, and education.
The Special Interest Group (SIG) Leaders Committee will be responsible for stimulating and facilitating collaborative development of their area of interest and guiding researchers interested in the area to consider undertaking other multidisciplinary research activities that include identifying collaborative opportunities, research projects and funding.
The Community Advisory Committee is to provide input and a community perspective into Raine Study activities. By establishing the Community Advisory Committee the Raine Study seeks to involve its participants (i.e. the Raine Study community) in the decision making and operational processes. The committee will provide an important link to researchers from the Raine Study community.
Section 3 DATA ACCESS
3.1 Data and biological samples access policy.
Overview of approval processes including principles of access to data and participants, terms of access, application processes, and policy around dissemination of research results.
3.2 Grant application policy
Information for 2017 Raine Study Grant application submissions (for studies to start in 2018/2019). Provides information on core management and core data access fees (and suggestedwording for grant applications), testing location for cohort assessments, staffing requirements, ethics information, sample size, consumer representatives, participant access to results, and background information on cohort representativeness.
Section 4 REPORTS
The draft Green paper has been prepared by the Raine Study Secretariat. Its purpose is to facilitate discussions with the Raine Study Executive regarding future developments and directions of the Raine Study.