The TVW Telethon Institute for Child Health Research

Fiona Stanley
Med J Aust 1998; 169 (11): 630-633.
Published online: 14 December 1998

Medical Research Perspectives

The TVW Telethon Institute for Child Health Research

The birth and growth of a research institute

Fiona Stanley

Diverse research workers, variously funded by public and private sources, were drawn together to create an Institute and an opportunity to work together on the complex problems in child health.

MJA 1998; 169: 630-633

Introduction - Research origins - Rationale for a multidisciplinary institute for child health research - Growth - Successes - Threats - References - Author's details
- - More articles on Aboriginal health

In 1967 two men shared a game of golf and a vision for research to improve child health. Sir James Cruthers, then Managing Director of Channel 7 (TVW, Perth), suggested to Jim Clarkson, then the Chief Executive Officer of the Princess Margaret Hospital for Children (PMH) in Perth, the concept of a "Telethon" to raise money from the community for research at PMH. The Telethon became an annual event and in the first year raised funds for the PMH Children's Medical Research Foundation, which funded two small hospital research groups: a clinical immunology research unit founded by Dr Keven Turner, an immunologist from Adelaide, and a clinical nutrition research group established by Dr Michael Gracey, a paediatric gastroenterologist from Melbourne with a special interest in Aboriginal children and their health.

From these beginnings, the TVW Telethon has gone on to fund a range of medical research in Western Australia, ultimately providing the essential infrastructural finance for the Institute for Child Health Research, established in 1990 and now a vigorous multidisciplinary research centre employing nearly 200 people. The Institute's name acknowledges not only this beginning but the continuing support from the TVW Telethon. Sir James Cruthers has only recently stepped down from the Institute's Board of Directors.

Research origins
The first two research groups funded by the Telethon were based at PMH. In the 1970s, the immunology group was beavering away, almost in isolation, in the neglected area of mucosal immunology, looking particularly at the developing respiratory tree and what role the immune system might play in allergy and asthma. This area of immunology and cell biology has now become of global importance in attempts to explain the epidemic of asthma and allergy sweeping the Western world. The work of Patrick Holt was particularly important at the time and has continued to be pre-eminent in the study of the development of allergic sensitisation and asthma.1,2

Meanwhile, I had been fortunate enough to be awarded a National Health and Medical Research Council (NHMRC) overseas training fellowship in epidemiology at London University and at the National Institutes of Health, USA. When I returned to Perth in 1977, I used the $4000 setting-up grant in the last year of my fellowship to establish the Western Australian Cerebral Palsy Register (the only other registers at that time were in Sweden and Denmark) and the first congenital malformations register in Australia (funded by the Commonwealth Government in the wake of the Agent Orange scare). Then, as Senior Medical Officer in Child Health for the Health Department of Western Australia, I and my colleagues developed statewide links with midwives and child health nurses which laid the foundations for the Maternal and Child Health Research Data Base. This population-based, record-linked database has become the best in Australia (and probably the world) and now underpins much of the epidemiological work of the Institute.3 They were great days, as there was so little going on in maternal and child health epidemiology in Australia and we felt like pioneers!

In 1980 these databases moved with me into a new NHMRC Unit of Epidemiology and Preventive Medicine at the Queen Elizabeth II Medical Centre, and spawned a range of epidemiological studies describing maternal and child health in WA and testing a range of hypotheses, focusing on birth defects, cerebral palsy and low birth weight. Telethon grants in the 1980s funded the Cerebral Palsy Register for nearly 10 years and a case-control study of dietary folate and neural tube defects as well.4,5 We commenced our work in indigenous maternal and child health and employed Aboriginal health workers in research before others had considered it important. The resulting partnerships with Aboriginal communities have grown even stronger since the Institute was established.

Towards the middle of the 1980s I sensed that only by collaborating with basic scientists were epidemiologists ever going to get at biological mechanisms, properly elucidate causal pathways and be able to develop effective preventive strategies. Telethon funds appeared less secure at this time as they were being given away to other causes. I discussed these problems with Professor Lou Landau, who in 1984 had just accepted the Chair in Paediatrics in Perth, and we began to think of setting up an institute of child health research at the Children's Hospital, taking those with NHMRC funding with us, trying to get some additional funds for infrastructure and solving complex diseases! We both thought it a wonderful idea and invited Sir Gus Nossal across from Melbourne to address the hospital on "The birth of a research institute" -- this inspiring lecture was given in 1985 and aroused interest among local people in the concept.

By this time Dr Wayne Thomas (from the Walter and Eliza Hall Institute in Melbourne), Dr Geoff Stewart (from the United Kingdom) and Dr Ursula Kees (from Switzerland) had all joined the Clinical Immunology Research Unit at Princess Margaret Hospital, and most of them now had "secure" NHMRC funding. Ursula Kees' group worked closely with the oncologists in the hospital, particularly Dr Michael Willoughby, the head of the oncology unit, who was determined that the Children's Cancer and Leukaemia Foundation would provide some secure funding for her laboratory in the new Institute. He could see this was crucial to the success of better identification of childhood cancers, investigating aetiology and discovering new therapies.

Were we mad? We planned to set up a world-class institute in an isolated city in the biggest but most deserted State in Australia, in the middle of the crisis over business and political corruption known as "WA Inc" and as a recession was in full swing. We invited a group of Australia's leading researchers to Perth in 1986 and asked them to interview all of the researchers in child health and make an assessment. Despite the difficulties, the committee felt we had the right ingredients and encouraged us to go ahead. With the support of the Princess Margaret Hospital Board, and particularly of Professor Lou Landau, the proposal was developed further.

In 1989, encouraged by Sir Gus Nossal, I applied for and was appointed Director of the new Institute. In 1990 we moved into our building -- the old School of Nursing at PMH, which was renovated with donations from the WA Lotteries Commission and the Incorporated Body of PMH. The support from other groups like the Variety Club of WA and the community has been the most crucial aspect of our success in this whole venture.

Rationale for a multidisciplinary institute for child health research
The problems in child health are now complex -- epitomised by diseases such as asthma, birth defects and other developmental problems, cancers and psychosocial problems. These stem from a complicated series of interactions between genes and environment, with variable causal pathways demanding complex solutions for their management or prevention. Our thinking was that if we brought together scientists from different disciplines under one roof we might be able to unravel the causes more successfully than working away separately in our little research areas. The aims of the Institute were to describe the burden of diseases in children and families in WA, to seek causal pathways using all types of scientific methods, and then to apply any knowledge to prevent disease in the community or to improve treatment at the bedside.

We started as 90 scientists in four separate groups in 1989, with little infrastructure support, although our research grants from the NHMRC and other local foundations were adequate. Cell Biology, Molecular Biology and Cancer and Leukaemia moved in under the direction of Patrick Holt, Wayne Thomas and Ursula Kees, respectively, from the old PMH Children's Medical Research Foundation. My group from the NHMRC Unit moved to form the Division of Epidemiology and Biostatistics. Research in all these groups has blossomed at the Institute.

Ursula Kees' group is making a seminal contribution on the role of homeobox gene malfunction in childhood leukaemia and has, in close collaboration with the PMH Oncology Unit and the international Children's Cancer Group, made significant contributions to the use of genetic markers to determine the prognosis and treatment for children.6,7Wayne Thomas's group is best known for its detailed work on the structure and immunology of house dust mite allergens, and a molecular approach to developing new types of immunotherapy8,9and the development of a candidate vaccine for all types of Haemophilus influenzae based on a conserved outer membrane protein.10 Patrick Holt's group has continued to describe the immunological mechanisms which operate during the development of tolerance to inhaled antigens,11,12 which are of extreme interest to both fundamental immunologists and allergists alike.

1992 was the year of recruitment! We conducted an international search for a top biostatistician, which paid off with the recruitment of Dr Paul Burton, who became the Institute's senior biostatistician, and his wife, Dr Jenny Kurinczuk, an outstanding perinatal epidemiologist with a special interest in reproductive issues. Dr Burton conducted theoretical biostatistical research in a range of analytical problems (such as the analysis of complex interacting data sets and new methods of randomised trials), supported much of the biostatistical needs of the Institute and of our collaborators and spearheaded our new endeavours in genetic epidemiology. Within two years he became head of our new Division of Biostatistics and Genetic Epidemiology.

Also in 1992 we sought an outstanding clinical researcher to establish a new Division of Clinical Sciences, with the brief of not only doing research in the Institute bridging the basic and clinical sciences, but also being a role model and stimulus for clinical research on the PMH campus. Dr Peter Sly was lured from Melbourne by offering him "fame and poverty" (he still has the letter) and he has continued to be a great success, collaborating with many groups in the Institute, the hospital and with fetal physiologists and respiratory researchers locally and internationally.

In that year as well we were extremely fortunate in convincing the Health Department of Western Australia to second to us two outstanding clinical psychologists, Dr Steve Zubrick and Sven Silburn, whose research has underpinned the State Policy on Youth Suicide and other strategies in child and adolescent mental health. Dr Zubrick became head of the new Division of Psychosocial Research, with Silburn his very able deputy.

The arrival of Australia's first MacFarlane Burnet Fellow, Professor Colin Sanderson, whose work on interleukin-5 was recognised internationally, created our last new division (Molecular Immunology) in 1994. This was an important bit of the jigsaw in our multidisciplinary attack on the complex disease of asthma. Dr Dierdre Coomb also arrived and established a laboratory specialising in the extracellular matrix, adhesion molecules and the mechanisms of inflammation, metastasis and haematopoiesis.

As I look back now, some of our recruitment was part of a grand plan and some, as you would understand if you were in such an isolated and remote community, was opportunistic. Whatever the reason, the resulting mix has worked, as shown by our growth (from less than 50 to nearly 130 research staff in eight years), the way that many groups are collaborating in the Institute and the output to meet our goals.

A major reason for our success in fundraising from the local business community was that our research was focused on health problems that were well known as major burdens to the community -- asthma, adolescent suicide, birth defects, cerebral palsy, cancers and Aboriginal health. Another major factor was that we have had significant success in translating results into action (see Box); examples include the research on folate and spina bifida, reducing suicidal behaviours, improving outcome following bone marrow transplants in children with leukaemia, influencing the uptake of Haemophilus influenzae type b vaccination (which virtually eradicated the disease) and establishing a successful maternal and child health program for Aboriginal families in Kalgoorlie. Most of these are national and international issues and our Institute is increasingly being seen as a source of information for government and a model of success in multidisciplinary research and in translating research into policy.

So, eight years on, have we been successful? How do you measure success in a multidisciplinary Institute? At the end of the first year of operation (June 1991) the Institute had $1.4 million in peer-reviewed grants, with a total operating revenue of $3 million (which included ongoing refurbishment costs). By the close of 1997 the Institute had gained $5.9 million in grants (including $2.5 million in NHMRC funding) and a total operating revenue of $8.3 million.

You cannot force groups of different disciplines such as immunology and epidemiology and biostatistics to work together; all you can do is recruit thoughtful and good scientists and put them next to each other and hope that they talk! I remember two episodes vividly -- Patrick Holt saying "we have a great hypothesis we have developed in the lab and we need you epidemiologists to test it out for us"; this spawned our multidisciplinary asthma cohort study with Patrick Holt, Paul Burton, Peter Sly, Anne Read and myself testing the hypothesis that early and repeated infections may influence the immune response away from allergy and reduce the risk of asthma. The other episode was Colin Sanderson (head of Molecular Immunology) commenting that one of the best people in the Institute was Steve Zubrick, the head of Psychosocial Research -- given the usual contempt in which psychologists are held by "serious" scientists, this was great praise indeed! Bridges being developed between groups enhance the chances of collaboration.

With all this success and delight that we have survived our birth, with the new joint Commonwealth and State government $22.5 million building program heading for an early 2000 completion date, with such community support and government acceptance of our role, why am I concerned for our future? Our vulnerability now relates mainly to research funding and the support for our next generation -- our current students and postdoctoral staff. We are finding that research funding is much better in other countries and in other States and that we cannot offer our senior and rising bright young minds incentives to stay with us or even to stay in full time research. Some are off to overseas positions or into the private sector or into academic jobs with all the toil of teaching but at least some security. Our most recent sadness was that Paul Burton and Jenny Kurinczuk have been head-hunted back to the UK to tenured, well paid (at least double the NHMRC salaries they are currently receiving) academic positions at the University of Leicester. We will miss them greatly, but we can take some pride in having provided an environment for these two outstanding young people to develop their research careers to this level.

Our policy of establishing an Institute by asking successful scientists to join us and bring their own salaries (usually NHMRC funded) was our only way of getting things going, but is not the way we can continue. It ensured that we only had peer-reviewed science in the Institute and meant that we could spend our precious and scarce resources on infrastructure and not research salaries. This ensured our survival, but it is not good policy in the longer term. The NHMRC roulette is not conducive to recruiting the brightest and the best. The Board needed little convincing to realise that such vulnerability is unacceptable and we are now looking at ways of securing our best people.

Independent institutes are disadvantaged compared with universities because they do not receive direct infrastructure support from the Department of Employment, Education and Youth Affairs. Our Institute cannot match this year's increases in academic salaries as the NHMRC decided not to fund such an increase for research for its grant holders. Yet young scientists cannot be expected to work for low wages when salaries in other similar countries are much higher. We continue to lobby at Federal and State level, and wonder why, with our successes in improving child health, excellent research and scholarship, we are so undervalued in this country.

Private funding alone is not the answer. I salute the likes of the visionary Sir James Cruthers and all the past, current and future corporate and private sponsors of research in Australia: what you could now do for us is to become advocates to convince governments to join with you in investing in our brightest and our best. Any less and our capacity to do research and benefit from it will be limited.

  1. Holt PG, Yabuhara A, Prescott S, et al. Allergen recognition in the origin of asthma. Ciba Found Symp 1997; 206: 35-49.
  2. Holt PG, Macaubas C. Development of long-term tolerance versus sensitisation to environmental allergens during the perinatal period. Curr Opin Immunol 1997; 9: 782-787.
  3. Stanley FJ, Croft ML, Gibbins J, Read AW. A population database for maternal and child health research in Western Australia using record linkage. Paed Perinat Epidem 1994; 8: 433-447.
  4. Stanley FJ, Watson L. Methodology of a cerebral palsy register. The Western Australian experience. Neuroepidemiology 1985; 4: 146-160.
  5. Bower C, Stanley FJ. Dietary folate as a risk factor for neural-tube defects: evidence from a case-control study in Western Australia. Med J Aust 1989; 150: 613-619.
  6. Kees UR, Burton PR, Lu C, Baker DL. Homozygous deletion of the p16/MTS1 gene in pediatric acute lymphoblastic leukemia is associated with unfavorable clinical outcome. Blood 1997; 89: 4161-4166.
  7. Salvati PD, Ranford PR, Ford J, Kees UR. HOX11 expression in pediatric acute lymphoblastic leukemia is associated with T-cell phenotype. Oncogene 1995; 11: 1333-1338.
  8. Thomas WR, Smith W. House dust mite allergens. Allergy 1998; 53: 821-832.
  9. Thomas WR, Smith W, Hales BJ. House dust mite allergen characterisation: implications for T-cell responses and immunotherapy. Intern Arch Allergy Immunol 1998; 115: 9-14.
  10. Thomas WR, Flack FS, Callow MG, Chua KY. A high-molecular-weight outer membrane protein that is a potential target for protective immunity to type b and untypeable Haemophilus influenzae. J Infect Dis 1992; 165 Suppl 1: S75-S76.
  11. Stumbles PA, Thomas JA, Pimm CL, et al. Resting respiratory tract dendritic cells preferentially stimulate Th2 responses and require obligatory cytokine signals for induction of Th1 immunity. J Exp Med 1998. In press.
  12. McMenamin C, Pimm C, McKersey M, Holt PG. Regulation of IgE responses to inhaled antigen in mice by antigen-specific gamma delta T cells. Science 1994; 265(5180): 1869-1871.

Author's details
TVW Telethon Institute for Child Health Research, Perth, WA.
Fiona Stanley, AC, MD, FAFPHM, FRACP, Director, and Variety Club Professor of Paediatrics, The University of Western Australia.
Reprints: Professor Fiona Stanley, TVW Telethon Institute for Child Health Research, PO Box 855, West Perth, WA 6872.

Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <>".


Milestones for the TVW Telethon Institute for Child Health Research
Year Corporate history Research highlights
1985–1990 Planning for an Institute: including international review Cloning of house dust mite allergens (Wayne Thomas et al, from 1988)
1989 Professor Fiona Stanley appointed Director 5 year NHMRC project awarded to Epidemiology division
1990 Institute opened with a Board of Directors and Scientific Advisory Committee and the following research divisions: Cell Biology (Patrick Holt), Molecular Biology (Wayne Thomas), Epidemiology (Fiona Stanley), Leukaemia and Cancer (Ursula Kees) Cloning of outer membrane protein of all types H influenzae (vaccine candidate) (Wayne Thomas et al)
1991 Affiliation with The University of Western Australia
Commonwealth grant to complete laboratories
Psychosocial Research (Stephen Zubrick)
Clinical Sciences (Peter Sly)
Folate confirmed to prevent neural tube defects (Carol Bower and Fiona Stanley)
1992 Affiliation with Princess Margaret Hospital for Children
Senior Biostatistician appointed (Paul Burton)
Launch of Hib vaccination program
World first folate and NTD prevention project launched
1993 New Board and other committees: Intellectual Property, Finance, Fundraising
Molecular Immunology (Colin Sanderson)
Cell Adhesion Laboratory (Dierdre Coombe)
WA Child Health Survey commenced
1994 Biostatistics and Computing (Paul Burton) becomes a division
Epidemiology Division now headed by Carol Bower
Immune deviation by g/d T cells (Christine McMenamin and Patrick Holt)
1995 Administration and Corporate Services established (Robert Ginbey) State Government pledge for new building
"Give every Child a Chance" fundraising campaign ($10 800 000 pledged)
International review
Child Health Survey Vol 1 (Stephen Zubrick and Sven Silburn)
HOX 11 deregulation in T cell leukaemias (Patricia Salvati and Ursula Kees)
1996 Consolidation of infrastructure (UWA, HDWA)
New approach to Commonwealth Government for building grant
First NHMRC Program for Public Health (Maternal and Child Health)
Child Health Survey Vol 2 (Stephen Zubrick and Sven Silburn)
Only one case of Hib meningitis reported (after vaccination program)
Aboriginal maternal and child health research project in Goldfields becomes a government-funded health service
1997 Joint announcement of Capital Works Grant totalling $22 500 000 from State and Commonwealth Governments Child Health Survey Vol 3 (Stephen Zubrick and Sven Silburn)
First reduction in rate of NTD (from average of 2 to 1.2 per 1000)
1998 Commence new building program in September Persistence of fetal Th2 immune responses in atopic versus non-atopic individuals (Susan Prescott and Patrick Holt)
2000 New building complete
Second international review


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