1000th participant in Raine Study 27 year follow-up

Antony Botello has done more than his bit in the name of health and well-being science, from before he was even born.

Twenty-six year old Antony, from Mosman Park, is part of the Raine Study and has been since his mother was pregnant with him.

He was recently the 1000th member of the Raine Study’s “Generation 2” cohort to participate in a series of health tests as part of the study’s “Generation 2, 27 year old follow up”, which is focussed on the genetic and early life factors that predict cardio-metabolic health and disease.

2900 pregnant women (Generation 1) were recruited into the study from 1989 to 1991 and participants, like Antony, have been involved in follow-ups and tests from birth through to young adulthood.

“Having been a part of the Raine Study my whole life, I feel incredibly privileged to be a young Australian who can volunteer his time to contribute to the significant and vital medical research the Raine Study conducts.

 “I can proudly say I would be more than happy to devote my time to any future follow-ups for the rest of my life.  Being a member of this group is a unique opportunity and the research not only benefits my own understanding of my health, but also provides important insight into the population’s health and well-being,” Antony said. 

Antony has been involved in all follow-ups, so has undergone a series of tests at ages 1, 2, 3, 5, 8, 10, 14, 17, 18, 20, 22, 25 and now 27 years of age.

His most memorable follow-up was at 22 years of age, when he was involved a sleep study, including an overnight stay to assess sleeping patterns.

“It is hard to forget falling asleep with so many wires and medical research devices attached to your body!” he said.

Antony said when his pregnant Mother was first asked to sign up to take part in the Raine Study, she was more than happy to agree as she saw the merits and potential of what the study was setting out to achieve.

“Since then as a family we have always been keen to learn about new research that has emerged with every follow-up conducted by the Raine Study as we feel we have personally contributed to these findings,” he said.

“My family are all proud members of the Raine Study and later in life, when I am a parent, I too would be proud to have my child be a member of the Raine Study.”

The Raine Study is one of the most richly detailed prospective multi-generational cohorts of pregnancy, childhood, adolescence and now early adulthood to be carried out anywhere in the world.  It was established in 1989 to determine how events during pregnancy and childhood influence health in later life.

Four generations of families are now involved in the study with data collected on Grandparents (Generation 0), Parents (Generation 1), Children (Generation 2) and now Grandchildren (Generation 3) from the same family.

With over 500 research papers published since that time, some key findings have included: Establishing the safety of ultrasounds and the standard of prenatal ultrasound scanning worldwide; the identification of genes associated with lung function, birthweight, puberty and language development; the benefits of breastfeeding on weight, asthma, allergies and behavioural problems; the impact of diet on behaviour and school achievement in teenagers; the impact of Vitamin D levels on allergies and asthma; and the benefits of organised sport as a child as a trajectory to health in adulthood.

The 27-year follow-up that Antony has been involved in includes a range of questionnaires, blood tests, urine samples, faecal samples, MRI scans, full body DXA scans, 3D photography of his faces and more.

Researchers are currently looking into many other areas of study including gut health, vision, mental health, spinal pain, blood vessel health, activity and sleep as well as work habits.

Meet Claire: 28 year old follow-up appointment

We followed the amazing Claire on part 1 of her 28 year old follow-up appointment recently. The commitment of our participants is something very special and we hope this little glimpse into what happens in a follow-up appointment showcases their amazing efforts.

 

Baby girl earns a special name, thanks to Mum’s lifelong commitment

Marisa Tucker has been part of the Raine Study her entire life, and when she and partner, Aaron, welcomed their first baby earlier this year, so strong was her association to the study, her new daughter earned the middle name of Raine.

The Western Australian Pregnancy Cohort (Raine) Study is one of the most extensive prospective and multi-generational cohorts of pregnancy, childhood, adolescence and now early adulthood to be carried out anywhere in the world.

It was established in 1989 and participants, such as Marisa, have volunteered their time to be part of the study for follow-ups as babies, toddlers, children, adolescents and now adults.

Most recently Marisa, and other members of the Raine Study “Generation 2” cohort, participated in their 27-year follow-up, which included a range of questionnaires, blood tests, urine samples, faecal samples, MRI scans, full body DXA scans, 3D imaging of their head and faces and more. All information collected through the follow-ups are compared to the same tests done in previous years and can be accessed by interested researchers from around the world.

Researchers are currently looking into many several specific health areas of study including gut health, vision, mental health, spinal pain, activity and sleep as well as work habits.

Marisa says the birth of her daughter, Araelia Raine, was the proudest moment of her life and that her middle name had been picked out well before she was born.

“The Raine Study is such a big part of my life and Raine is a beautiful name, so we knew it was one we would use when we had our first daughter,” she said.

“It also had special significance for my husband too, so when we first spoke about having a family almost four years ago and we both mentioned the name, it was a sign we just had to use it,” Marisa added.

Marisa said she loved being part of the Raine Study, as she felt she was helping make a difference to the health and well-being of the population.

“I really feel like as participants in a study like this we are making a difference in the world and I am proud to be part of it.”

Almost 500 research findings have been published using data from participants like Marisa, impacting policy and practice in health in children, teenagers and adults, including:

  • Establishing the safety of ultrasounds and the standard for routine prenatal ultrasound scanning worldwide.
  • Identifying genes associated with lung function, birthweight, puberty and language development.
  • Finding that children who were breastfed for four months or longer had a healthier weight, had less asthma and allergies and less behavioural problems.
  • Finding that teenagers who ate a Western diet (high in processed foods) have more behavioural problems than teenagers who have a healthy diet.
  • Finding that a better quality diet in adolescence is also related to better school achievement.
  • Finding that low vitamin D levels put children and teenagers at an increased risk for both allergy and asthma, and this affects boys more than girls.
  • Finding that work absenteeism is identified as a significant issue for young adults and is associated with spinal pain and mental ill-health.
  • Identifying trajectories characterised by participation in sports across childhood and adolescence predict better physical health in adulthood.

Meanwhile, the children of Marisa’s cohort who have turned two, are now members of the “Generation 3” cohort.  Similar tests are being done on these children as were done on the original Raine Study cohort as part of key longitudinal data collection.

Marisa says she is excited for Araelia Raine to eventually be part of the Raine Study.

“Having Araelia involved will give me the chance to go through some of the same tests again with a new and completely different point of view.

“I know my Mum loved taking me to the studies and being part of them all too,” she said.

Meet Alex: Participant Profile

Alex Marsh is on our Community Advisory Committee as a Gen2 participant. She is also the Secretary of the committee and does an awesome job of writing and distributing our minutes for us. We sat down with Alex to chat about the Raine Study and what it means to her.

The Raine Study has been part of your life, what does it mean to you? Why do you keep participating?
The Raine Study normalised seeing a range of health professionals and researchers, since before I was born.
With family in the medical and research fields, it was more a question of why would I not keep participating when so much information can be collected.


What has your experience with the Raine Study been over the years? How has perhaps your perception of what you have been involved in changed from when you were a child, teenager and now adult?

As a child and teenager, I can only remember it as a positive because we got the day off school!

Now that I have a chronic illness and I am studying Occupational Therapy, I can now see how important it is to have willing participants to undergo testing that will have such an impact on not just us, but future generations.

Why do you see the Raine Study as important?
It’s a way to give back to the community in a local, national and international sense by giving up one or two days every couple of years, while learning about yourself at the same time.

It’s one of the most unique ways of volunteering that I can think of and carries a lot of weight when you think of the research that has come out and will continue to come out from the data collected from us and the impact it can have on our families, preventative health and public health.

What has been your most memorable Raine Study moment over the years?
Definitely the opportunity to fly to Canberra with Professor Fiona Stanley on behalf of the Raine Study to discuss what adolescents concerns for the future were.

Why did you choose to be part of the Community Advisory Committee?
If the Raine Study wants to be successful in the future and have happy participants as well as meaningful outcomes, I see it as important that researchers and participants have the opportunity to integrate and talk with one another. I love that this is an opportunity for the participants to have a voice and potentially direct studies in the future to where the cohort sees most beneficial.

Meet Roland

Roland Kerr is a member of the Community Advisory Committee as well as a Gen2 participant in the Raine Study. The Community Advisory Committee is made up of participants from the Gen1 and Gen2 cohorts and it is their role to provide input and a community perspective into Raine Study activities.

The Raine Study has been a part of Roland’s entire life and we had a chat to him about what it means to him and why he continues to volunteer his time.

 

The Raine Study has been part of your entire life; what does it mean to you? Why do you keep participating?

For as long as the Raine Study continues to discover more about our health, and the way that we grow up, my continued participation is a way for me to give back to society and to follow its journey from up close.

I love that we always get a little insight into our understanding of medicine and what people are curious about from the tests that researchers want Raine Study participants to do.

What has your experience with the Raine Study been over the years? How has your perception of what you have been involved in changed from when you were a child, teenager and now adult?

When I was a young child I just assumed that the Raine Study tests were part of a regular checkup with doctors that everyone did!

When I became a part of the T-team (Teenage Raine Study Advisory Group), I became a lot more aware of how rare it was to be in the Raine Study, and therefore how important it was for study that we didn’t have anyone drop out.

Now that I’m an adult, the biggest change has really been that I can now see the results of research that has used the Raine Study data, and I can appreciate how my own health has been improved from having frequent check-ups.

I can better appreciate the benefits of the Raine Study globally, and for me personally.

Why do you see the Raine Study as important?

There aren’t very many pre-natal studies out there, and here we are able to look over and cross-reference everything about the participants from that early on. I think there are all sorts of connections between our birth, our growth, and our lives, that might otherwise never be noticed. Especially with the Gen1 (parents) and Gen3 (children of Gen2) participants taking a bigger role, we can see how inheritable certain things are, and how we can better manage conditions in childhood for a better adulthood.

 What has been your most memorable Raine Study moment over the years?

There are a lot of happy moments that come in as close seconds like the armbands we wore at school, or the time we got to watch a movie while waiting for the CO2 test, but it probably is the stress test / improvisation test. Unlike most of our participants, I knew a little bit about what was going to happen well ahead of time, but it was still quite a shock to the system!

Why did you choose to be part of the Community Advisory Committee?

The Community Advisory Committee opening up was a great opportunity to have my say on the future direction of the Raine Study. I care a great deal to see the Raine Study continue to succeed, and I want to stay in touch with the other children, staff, and researchers, that I’ve spent all these years around.

Meet Martin: Participant Profile

Martin Becker is a member of the Community Advisory Committee and also our UJV Board.

The Community Advisory Committee is made up of participants from the Gen1 and Gen2 cohorts and it is their role to provide input and a community perspective into Raine Study activities.

Martin is one of our original Raine Study ‘Dad’s’ – and part of our Gen1 group. We had a quick chat with Martin to ask him about his experience with the Raine Study over the last 27+ years.

 

As a member of the “Gen1” cohort, can you remember what made you to decide as a family to sign up to be part of the Raine Study?

We thought any study would be of benefit to both our family and the general community.

 

What has your experience with the Raine Study been over the years?

Our eldest son Michael has been part of this study for 27 years.  The amount of information gathered over those years is amazing and to have that information on his life is fantastic. In terms of benefits to the greater community, access to information from so many participants is truly a huge asset and will continue to add value to the community for many years to come.

I have learnt even more about the Raine Study since joining this committee and can see the real value this continues to add to the community.

 

What have you been involved in yourself in terms of Raine Study research over the years?

I most recently participated in the sleep study and found out I have sleep apnoea which was a big surprise but I am now aware and treating it, so that was a bonus for me.

 

Why do you continue to be involved in the Raine Study? Why do you see the Raine Study as important?

I think the benefits of this research are very real and contributes to the health of our community.

 

Why did you choose to be part of the Community Advisory Group?

I wanted to be involved in a project that gave something back to the community.

 

 

Meet Claire: Participant Profile

Claire is part of our Gen2 cohort, a member of the Raine Study Community Advisory Committee and also a participant representative on our Management Committee.  We had a quick chat with Claire recently to ask her about her experience with the Raine Study throughout her whole life.

The Raine Study has been part of your life, what does it mean to you? Why do you keep participating?

The Raine study is an opportunity to contribute to society, to help others, that’s why I have always been involved and will continue to be.

What has your experience with the Raine Study been over the years? How has perhaps your perception of what you have been involved in changed from when you were a child, teenager and now adult?

I think my perception of the Raine Study and has changed over time. As a kid I didn’t really understand what it was all about, I just thought it was something every child did, but as I have got older I realise the value of the research being done and understand that my participation really can help others now and in the future.

Why do you see the Raine Study as important?

Without research like the Raine Study our knowledge about health and well-being will never advance, and being one of the longest running studies in world makes it even more valuable, I am proud to be a part of it.

What has been your most memorable Raine Study moment over the years?

I remember as a kid we were given stickers and snacks and once we got to watch a movie, they made it fun for us, and I always enjoyed meeting the other kids.

Why did you choose to be part of the Community Advisory Committee?

I have always been interested in the research and the outcomes that have come from the information we have provided over the years. I chose to be part of the Community Advisory Committee to find out more about what is being done, and welcome the opportunity to have a say on the current and future directions of the Raine Study.

 

Meet Rachael: Participant Profile

Rachael Wilkinson is part of our Gen2 cohort, a member of the Raine Study Community Advisory Committee and also a participant representative on our Scientific Review Committee.  She also recently moved interstate, but still joins our meetings via Skype or Zoom and we really appreciate her commitment to the Raine Study!

We had a quick chat with Rachael recently to ask her about her experience with the Raine Study throughout her whole life.

The Raine Study has been part of your life, what does it mean to you? Why do you keep participating?

The Raine Study is very important to me because it is something I have always been really proud of. Our information has been a valuable contribution to society because it has been used to progress health research for almost three decades now! I think that’s pretty amazing. For this reason I will participate in the Raine Study for the rest of my life.

What has your experience with the Raine Study been over the years? How has perhaps your perception of what you have been involved in changed from when you were a child, teenager and now adult?

I am very lucky in the sense that my Mum made a point of always stressing to me how important the Raine Study was for the good of the world and it was something I was able to grasp from a young age. When I was very small, I found the sessions with all the strange and exciting people and tests to be fun – even though at that time I didn’t quite understand what it was all about. As I got older the follow-ups became more of a hassle, but I was able to understand intellectually how valuable our contributions were. I still feel this way as an adult.  I also now consider the extra health screening we get access to, as participants, to be a valuable privilege.

Why do you see the Raine Study as important?

I think the Raine Study is important because our data has been collected with such integrity for so long. In addition to the current data we can provide, we will also act as a time capsule for our generation. Young people are the future, studying us is important.

What has been your most memorable Raine Study moment over the years?

The sleep study, for sure. It felt very strange!

 Why did you choose to be part of the Community Advisory Committee?

I chose to be part of the Committee because I really believe in the value of the Raine Study and want to see it last my lifetime, perhaps even beyond. As I am no longer based in WA, I think it is also an opportunity to represent participants who are interstate and overseas but still want to participate in this fascinating and important study.

 

Meet Jessie: Participant Profile

Jessie Appleyard is part of our Gen2 cohort and is also the Chair of the Raine Study Community Advisory Committee.

The Community Advisory Committee is made up of participants from the Gen1 and Gen2 cohorts and it is their role to provide input and a community perspective into Raine Study activities.

We had a quick chat with Jessie recently to ask her about his experience with the Raine Study throughout her whole life.

  1. The Raine Study has been part of your life, what does it mean to you? Why do you keep participating?

For me, being part of the Raine Study means that I have the opportunity to contribute to the health and wellbeing of future generations. I keep participating because I want to do anything I can to help make the world a better place in any way that I’m able to.

  1. What has your experience with the Raine Study been over the years? 

I’ve always been excited to be in the study, but over the years, my reasoning for the excitement has changed. When I was younger, it was getting a day off school!

But as I’ve grown up, I feel honestly very lucky to be able to contribute to research and understanding of public health in such a unique way. My mum was always good at encouraging me to participate, but I can’t honestly think of a time when I didn’t want to do any of the follow ups, because even though I’ve not always realised the magnitude of the study, I’ve always understood that it was something important.

  1. Why do you see the Raine Study as important?

This study is so unique. And I don’t think a lot of people realise the potential of what the Raine Study has to offer, not only to our immediate communities but to the world as well.

  1. What has been your most memorable Raine Study moment over the years?

My most memorable moment in the Raine Study was having the honour to speak at Professor Fiona Stanley’s retirement symposium. She is honestly such an inspiring woman who is truly passionate and driven in improving public health.

  1. Why did you choose to be part of the Community Advisory Committee?

I’ve been part of the various feedback groups for the Raine Study since I was 11  but this particular committee is important to me because it’s about how we can keep this amazing thing going. It’s such a valuable resource and I want the Raine Study to be around for as long as possible.

Meet Cornel: Participant Profile

Cornel Scheibling is part of our Gen1 cohort and also a member of the Raine Study Community Advisory Committee.

The Community Advisory Committee is made up of participants from the Gen1 and Gen2 cohorts and it is their role to provide input and a community perspective into Raine Study activities.

Cornel also represents the Community Advisory Committee on the Raine Management Committee, so continues to dedicate a lot of his time to the Raine Study – thanks Cornel!

We had a quick chat with Cornel recently to ask him about his experience with the Raine Study over the last 27 years.

 

What made you sign up to the Raine Study all those years ago?

The study appeared to be worthwhile and given the focus at the time on how ‘outside influences’ could affect health, I thought it would be something good to be part of – especially if it found results that would make a difference.

 

I had three young children at the time, so research into child health was especially important to me.

 

Describe your experience with the Raine Study over the years?

The Raine Study has been carried out professionally and maintained my interest over the years. My original perception of the positive nature of the study has been affirmed with the research and results I have seen.

 

What have you personally been involved in over the years?

I have supported any studies that, as a father of a Gen2 participant, I have needed to be involved in. I have also encouraged my daughter to maintain contact and be involved.

Recently I was involved in the sleep and eye studies for Gen1.

 

Why do you see the Raine Study as so important?

Simply because research is what changes and improves health matters.

 

Finally, why did you put your hand up to be part of the Community Advisory Committee?

In part, to help repay the study for its great work by helping out, but also to learn more about the results and research being undertaken with the data collected by the Raine Study.