Diseases don’t know boundaries or country codes, we have to build systems that allow researchers to collaborate internationally.”
— Professor Richard Sinnott
While some of our most common chronic diseases are endocrine disorders, including diabetes, obesity and thyroid conditions, there are also a number of rare conditions, such as adrenal tumours and disorders of sex development that result from problems with the endocrine system.
Because of the rarity of many of these disorders, it is often challenging for researchers and clinicians to gather sufficient amounts of patient data to support more meaningful and statistically powerful clinical trials.
Only one in two million people will develop adrenocortical carcenoma, for example, with most clinical trails only recruiting small numbers of patients for each study — certainly not enough people to confidently compare the effectiveness of treatments.
Established and led by Professor Richard Sinnott, Director, eResearch at The University of Melbourne, the endocrine genomics virtual laboratory (endoVL), funded through Nectar, is changing the face of endocrinology, by providing secure, online access to extensive data sets that allows endocrinologists to work together.
With more than 8,500 adrenal tumour cases, currently registered on endoVL, it allows researchers to draw on a large enough cohorts to conduct studies with real statistical power.
“It changes the robustness of the science and also the power of what researchers can do,” Professor Richard Sinnott said. “We have more than 25 large-scale clinical trials running right now, both in diabetes and in adrenal tumours, and they involve research groups globally,” he said. “Diseases don’t know boundaries or country codes, so we have to build systems that allow researchers to collaborate across borders.”
The systems are also growing every day — the current registry has over 100 centres internationally contributing adrenal tumour cases to the virtual laboratory.
And with many users now building on the statistical power of endoVL to publish their papers in high impact journals such as Nature Genetics and in the New England Journal of Medicine, many researchers and centres are now quickly getting on board.
“It’s like a honeypot,” says Professor Sinnott. “Once you start building it everybody wants to be involved, if you’re not involved, you will be overtaken by researchers who are making the most of that statistical power.”
The endoVL adrenal tumour registry is now also the basis of a recently funded $12 million Horizon 2020 platform, built by Professor Sinnott’s University of Melbourne eResearch team.
But it’s not just adrenal and rare endocronogical cases that use endoVL, with registries for Type-1 Diabetes, Disorder of Sex Disease, Niemann-Pick Disease, Atypical Femur Fracture, and Polycistic Ovarian Syndrome, now providing a portal for clinical research communities in Australia and around the world, to store and access sensitive clinical and biomedical data.
Associate Professor Maria Craig from The Children’s Hospital Westmead in Sydney, is a Chief Investigator for the Australasia Diabetes Data Network and an avid user of endoVL.
“We have used endoVL to develop a national database of childhood diabetes — including existing and new onset cases — which will enable us to analyse longitudinal outcomes, care, and complications from a national perspective,” Associate Professor Craig said. “It’s the first time the data on childhood diabetes from the five major children’s hospitals in Australia have been aggregated, with around 5,000 patients recruited to the registry to date.
“endoVL allows us to show the difference in care among children with diabetes across the country, by age, or by gender, and whether these different treatment modalities influence outcomes.”
Associate Professor Craig says that endoVL has become an essential component of her study, providing her team with research options they hadn’t even thought of prior to using the infrastructure.
“The search and analysis tools available through the endoVL have enabled our investigators to query and learn from the data in real time, and in ways they had not envisaged at the beginning of the study,” she said.
“If we wanted to compare glucose control in children with insulin pumps to those on multiple injections we could simply use the endoVL search tools to answer the questions – breaking it down by gender, age group, centre, state, diabetes type, and by many other variables.
“These are things we hadn’t set out to ask, but the way the software has been developed, we now have these wonderful search tools that give us these options.”
With plans of expanding the registry, Associate Professor Craig and Professor Sinnott were recently awarded a $2million JDRDF grant to include centres who manage adults with diabetes in the registry.
“It potentially can be applied to a broader population and to other diseases, which was the whole goal of endoVL,” Associate Professor Craig said. “With the help of endoVL, research into numerous different endocrine diseases have already started and will have results with a much greater impact due to the statistical power of global patient registries.”
Professor Sinnott also sees potential to do much more with the endoVL infrastructure.
“The key is to sustain these registries, and to build more of them,” he says. “Pick any disorder and you’ll find they will need a patient registry for clinical studies and trials — whether it’s spinal injury, brain injury or cancer — they all have the same story, the same needs, and this infrastructure and the lessons learnt in developing, delivering and managing it can help them all.”
For more information about endoVL, go to, https://endovl.org.au