History

As the Aboriginal Health Education Officer at the Children’s Hospital at Camperdown, Rita Williams was involved in supporting a young Aboriginal family whose 16 month old daughter presented with kidney failure in 1993. By the time she was two years old, she had a kidney transplant, and today she is a young adult and doing well. Working with this young family inspired Rita to approach the hospital about developing a research project to look at renal disease in Aboriginal children.

The idea for the ARDAC study came from John Knight and Rita Williams who had both worked on the Check Your Kidneys Manual in 2001, a manual for Aboriginal Health workers to assist them in teaching their communities about chronic kidney disease. Recognising the significant burden of chronic kidney disease and kidney failure in Aboriginal communities Rita wanted to initiate a research study that could determine whether kidney problems for Aboriginal people began in childhood. It was decided to screen Aboriginal and non-Aboriginal from across NSW. Community consultation began in 2001 and 2002 was the first year of screening. At this early stage there was plans to screen the participants once only, by the end of 2003, 2267 children had been screened from 13 urban, rural and remote screening areas. In 2004 it was decided to extend the study for a further 2 rounds of screening (2004-05 and 2006-07). Approximately two thirds of the original participants were screened.

It was not until 2002 that the funded ARDAC journey began.

The purpose of Antecedents for Renal Disease in Aboriginal Children (ARDAC) Study was to begin unravelling the mystery about why Aboriginal people are more at risk of chronic kidney disease than non-Aboriginal people, and to contribute to closing the gap in health differences.

Before ARDAC began to take shape, ethics approval and funding were needed. Ethic approval initially came from The Children’s Hospital at Westmead, The Department of Education, and the Aboriginal Health and Medical Research Council. In 2002 ARDAC was supported with limited funding from Financial Markets for Children and then from a NHMRC Centre for clinical research excellence in renal medicine grant held by a consortium led by Professor Jonathan Craig, head of clinical research in the Centre for Kidney Research in the Kids Research Institute of the Children’s Hospital at Westmead. At that time the research team comprised Rita Williams, Ms Leigh Haysom, who did her PhD on the study and Sandra Puckeridge, business manager for the Centre for Kidney Research, supported by Jonathan Craig and Dr Elisabeth Hodson.

The following list acknowledges those people responsible for establishing the early phases of this unique and important study.

CIs: Professor Jonathan Craig; Dr Elisabeth Hodson, Prof Paul Roy, Prof David Lyle, Dr Della Yarnold.

Click here to link to original study proposal

Advisory Committee Members:
CIs: Professor Jonathan Craig; Dr Elisabeth Hodson, Prof Paul Roy, Prof David Lyle, Dr Della Yarnold.

Chief & Associate Investigators and ARDAC Advisory Committee and Field team Phase III - 2014 - current

Advisory Committee Members:

CIs: Professor Jonathan Craig; Dr Elisabeth Hodson, Prof David Lyle, Dr Della Yarnold till June 2018 - replaced by Ms Michelle Dickson.

Phase III - Kidney screening – 16 years on…..

After 16 years, and thousands of kilometres, the first two phases of the study have been completed. More than 3750 children and young people from 15 regions across NSW have participated in the study, with 57% identifying as Aboriginal.To continue to learn more about the early signs of kidney and heart disease and diabetes in young people, the study is now in its third phase.The goal of this phase has been to continue to follow the same participants plus recruit new participants as they finish high school and transition into adulthood. You can read some of our initial results or watch ARDAC the movie to learn more about ARDAC's history.

As the study progressed and our participants become older, we have changed from a school-based study to a community-based model with ongoing consultation and feedback at all levels. Now that the vast majority of the study participants are young adults the ARDAC team are increasingly collaborating with a number of Aboriginal Controlled Community Health Services (ACCHSs) and local community organisations. ARDAC operates under and Advisory Community and ethics committee approval from Aboriginal Health & Medical Research Committee (AH&MRC), the Sydney Children’s Hospital Network (SCHN) and the University of Sydney (USYD).

If you or your community would like to participate in our study, please contact us.