the Raine Study History

The Raine Study, (or the West Australian Pregnancy Cohort Study as it was formerly known) would never have existed were it not for one visionary woman who gave the study her name: Mary Raine.

Mary Bertha Raine was born in London in 1877, the eldest of 13 children.

Migrating to Australia in 1900, she arrived in Perth in 1904, at the age of 23.

Despite humble beginnings, Mary was a strong and astute woman. Determined to succeed from an early age, she invested and built considerable property assets in Perth, notably the Wentworth Hotel, located in Raine Square.

Married twice, Mary made her second husband, grazier and philanthropist Arnold ‘Joe’ Yeldham Raine her business partner. Upon his death in 1957, the devastated Mary donated their financial legacy to the University of Western Australia and the Yeldham and Mary Raine Foundation was born with the premise to initially research the causes of arteriosclerosis, the disease that had caused her husband’s death.

When Mary Raine died in 1960, she left the majority of her estate to The Raine Foundation (now Raine Medical Research Foundation). In total she bequeathed the Foundation nearly $1 million.

Nearly 30 years later, John Newnham, a young Western Australian obstetrician with a passion for research, had a chance meeting with the Foundation’s accountant. John learned that the Foundation was looking to award a considerable grant to one large scale visionary project.

John and a group of prominent investigators (Professor Fiona Stanley, Professor Lou Landau and Professor Con Michael) set to work on the grant application immediately. They had two objectives: firstly, to develop a long term cohort to study the role that early life events (from the womb onwards) had on later life, and secondly, to investigate the effects of frequent ultrasound scans during pregnancy. This second component was funded by a large NHMRC (National Health and Medical Research Council) grant.

The application was speedily submitted and fortuitously the award was made. The Raine Study was born and the team got underway immediately. From 1989 to 1991, 2,900 pregnant women volunteered to be part of the study. The women were randomly assigned either routine obstetric ultrasound or multiple scans.

Extensive data was collected during pregnancy and the children were assessed at birth.

The Raine Study initially established a set of ‘core data’ which would then be added to at each future data collection ‘follow up’ stage. The data in these sets included basic measures on each participant, such as height, weight and blood pressure in order to track them longitudinally over their life course.

The initial follow ups were scheduled for the Raine Study infants and toddlers (now known as Gen2), whilst their parents are known as Gen1. The assessments took place at Princess Margaret Hospital, where the Institute for Child Health Research was located (now TKI.)

Early data on the children were collected to assess their progress including height, weight, blood pressure, physical health, growth and development.

Starting school is a huge milestone in a child’s life and the Raine Study was there to witness this big step. Gen1 were asked to complete questionnaires and Gen2 contributed core data plus lung function, allergy testing and hearing tests.

Once Gen2 were established at school further questionnaires were completed by Gen1 at eight years. The children completed tasks related to their early literacy and numeracy, along with exercise tests.

At the ten year follow up an assessment of Gen2’s language development, behaviour, general health, parent health and happiness was undertaken. The Gen2’s school teachers got involved in the Study, providing information on the school, the child’s academic, literacy and numeracy performance and the child’s behaviour and any special needs.

With the school years marching on Gen2’s primary and secondary caregivers (Gen1), their school teachers and school principal were all asked to complete questionnaires on the child’s performance at school.

Additionally, physical assessments including blood tests, lung function and allergy testing were undertaken.

In 2006 the first ‘sub study’ took place as Gen2 entered adolescence, focusing on female reproductive health.

As the school years came to an end, a wide range of data was collected from Gen2 relating to physical fitness and motor competence, diet and nutrition, cardiovascular health, spinal pain, anthropometry (body size and composition) blood pressure, cognitive ability, liver ultrasounds and lung function.

To facilitate the bringing together of the whole ‘life-course’ of data on Gen2 from fetus to adolescent, the Raine Study Executive Committee was established.

The Committee, chaired by Professor Ian Puddey, then Professor John Challis and Professor Robyn Owens supported the establishment of a Scientific Director, A/Professor Craig Pennell. With clearer governance a culture of collaboration was developed which created exponential growth in discoveries.

In 2009, the second ‘sub study’ took place as Gen2 turned eighteen, focusing on responses to stress. Their blood and saliva samples were collected to measure stress hormone levels in response to a simulated stressful situation.

With Gen2 either entering the world of employment, or continuing with their formal education, testing broadened even further. A comprehensive eye examination was conducted, a DXA scan was undertaken to measure bone density and body composition, and a fibroscan was done to measure liver stiffness using new technology. Male participants were also involved in a study examining male fertility.

With sleep and activity being important lifestyle factors related to health and the ability to work, the twenty two year follow up focussed on these behaviours, lung health and work productivity.

In addition to the usual surveys and blood tests the participants also had a comprehensive lung function and asthma test, height and weight measurement, blood pressure, muscle endurance and pressure testing, wore activity monitors for a week and completed a full overnight sleep study.

As the Raine Study participants matured, the offices for the Raine Study were moved to facilities at UWA (becoming the centre agent of the study) in 2014.

Professor Peter Eastwood (Director) and Professor Leon Straker (Scientific Director) took over the leadership of the Raine Study in 2013 and set about establishing the human and technical systems needed to support what was now a very large research enterprise. Working with participants, staff, researchers and other stakeholders they developed the organisation to be ready for the next 25 years.

The third sub study focused on environmental factors. Now that members of Gen2 were aged twenty five to twenty six and mostly in employment, an online questionnaire was distributed to them exploring their working environment and how this affected their health, work performance and behaviour. The survey included questions on personality traits, demographics, interactions and opportunities to work at a high level. To look at changes over time, the data was collected again when the Gen2 participants were twenty eight.

Gen1 were the young parents originally recruited in 1989-1991, who diligently brought their Gen2 child for testing for all the follow ups until Gen2 were young adults. Whilst Gen1 completed some surveys about themselves, as well as their child, and did some physical assessments and provided some blood samples (including for DNA genetic information), this was the first follow up to focus on them specifically. The testing they completed mirrored what their children had done at 22 years – with intensive data on sleep, activity, lung health and work.

By 2016 some of the original Gen2 participants had become or were on the way to becoming parents themselves which presented an opportunity to invite their children to become part of the Raine Study. Information was collected on the Gen3 children aged between 2 and 10 years old as part of a study with Australian Autism.

Family questionnaires were completed and the child’s height, weight, waist, hip and head circumference, skin folds and blood pressure were all measured. Assessments were also conducted to measure motor control and language development and biological samples were collected.  Many of the measurements were the same data was collected on their Gen2 parents when they were children.

As members of Gen2 reach peak adulthood the focus of testing shifted to health affected by lifestyle factors including cardiovascular health and internal fat deposits. An MRI scan was conducted measuring ectopic fat (fat which settles around internal organs).

Gen2 participants also had height and weight measurements taken, blood pressure, whole body pressure, a fasting blood sample, faecal samples, and eye testing. Female participants had a breast density scan.

In 2017, to facilitate developing an optimum governance, the Raine Study Unincorporated Joint Venture (UJV) was established.

The UJV is a collaborative partnership agreed between the University of Western Australia, Curtin University, Edith Cowan University, Murdoch University, the University of Notre Dame, Telethon Kids Institute and the Women and Infants Research Foundation.

By the age of twenty seven the Gen2 members were making many economic and financial decisions as part of their everyday life. This survey was conducted online in a game style format, to collect data on how those decisions were made and what factors affected them.

A selection of Gen2 who do and do not consistently experienced low back pain had an MRI scan of their low back to determine what is normal for young adults.

In 2018, the Raine Study welcomed Jan Stewart PSM, BA, MSW.  HonDLitt.WAsust, FAIM, GAICD as the independent Chair of the Raine Study UJV Board, taking over from the interim Chair Professor Robyn Owens. With her unique experience and expertise in strategic planning, leadership development, governance and philanthropy, Jan’s priorities included building the profile of the Raine Study to ensure cohort retention and help secure long term funding.

The study celebrated the publication of the 500^th research article using its data.

This particular article found significant relationships between events that occurred during the pregnancy of a child’s mother and later obesity and depression in adulthood of that child.

For the first time the grandparents of Gen2 were invited into the Raine Study. The initial focus was on breast density following breast scans for Gen2 female participants, their mothers (Gen1) and now their grandmothers (Gen0). Increased breast density is a risk factor for breast cancer in older women and understanding what is normal at younger ages is important for early prevention and intervention.

As Gen2 reached their twenty-eighth year the standard core data was collected. In addition, tests were run to assess artery function and identify factors associated with impaired function. Identification of the genetic and environmental factors affecting eye health took place. Female Gen2 participants had a breast density scan.

The Raine Study marked its thirtieth anniversary in 2019. While we had planned a worthy celebration of this milestone, the global COVID-19 pandemic intervened. Although we couldn't celebrate 30 life-changing years with our thousands of participants, their families, researchers and partners in person, we worked hard to make sure each and every one of them knew how much their involvement in and support of the Raine Study means.