Overview/History

Key Documents for Public Access

Overview

[Section 1]      Key publications

[Section 2]      Organisational structure

[Section 3]      Data access

[Section 4]      Reports

 

NOMENCLATURE

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).

Gen0               Grandparents

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

2.1       Current organisational structure diagram

2.2       Roles of key committees and senior positions including terms of references

2.2.1    The Raine Management Committee

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.

2.2.2    The Raine Study Scientific Review Committee

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.

2.2.3    The Raine Study Translation Committee

The Translation Committee is to assist the Raine Study in translating its research findings into improved, evidence-based health policies practices, and education.

2.2.4    The Special Interest Group Leaders Committee

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.

2.2.5    The Raine Study Community Advisory Committee

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.

2.3       Raine Study Senior Staff Roles

 

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

4.1       The Raine Study Future – Green Paper 25 July 2014   

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.

4.2       2016 Raine study activity report