April 2021
Emerge Australia is delighted to announce that the first Australian ME/CFS patient registry is now officially open! We have partnered with Solve M.E. in this landmark undertaking, which will help create the largest possible dataset and harness the power of big data to understand ME/CFS.
The You+ME Registry, an initiative of Solve M.E., is an online clinical study of individuals committed to identifying a cure for ME/CFS and other post-viral illnesses. Created by and for the people who use it, the Registry consists of people with ME/CFS and control volunteers – collectively providing the research community with critical insight into the lived experience and genetics of ME/CFS and post-viral illnesses.
What Does it Mean?
Australian ME/CFS patients and healthy control volunteers can now sign up to participate in the Australian registry by completing an online survey on medical history, co-occurring conditions, medications and symptoms.
Participants will then receive a link to the You+ME app which works as a symptom tracker, recording ongoing symptoms and activity and how they affect everyday life – in contrast to the snapshot that might be reported to a healthcare team during an office visit.
More than 3000 participants globally have already joined the Registry to date, generating more than one million data points. As the Registry grows it will become an increasingly robust resource for researchers, unleashing the ability of big data to identify otherwise elusive insights for ME/CFS as it has for other complex illnesses.
The initiative is the first, critical step to the launch of the Mason Foundation-funded ME/CFS Biobank in Australia.
“Everyone who signs up is not only helping with the big data project but they will also have the opportunity to help Aussie scientists doing biomedical research.”
“Our whole team is just so pleased to be able to offer the symptom tracking app for people with ME/CFS here in Australia,” Emerge Australia CEO Dr Heidi Nicholl said.
“We’re also using it as the primary way to recruit people into the new ME/CFS Biobank. This means that everyone who signs up is not only helping with the big data project but they will also have the opportunity to help Aussie scientists doing biomedical research.”
“We are so pleased to collaborate with Emerge Australia on their efforts to expand ME/CFS research and create the first Australian ME/CFS patient registry and biobank,” said Sadie Whittaker, chief scientific officer at Solve M.E. “Finding treatments and a cure for ME/CFS, a complex, debilitating illness that takes so much from so many, demands that we share and harmonize data to build a resource that is exponentially more valuable that any one dataset alone.”
The project is an international effort that includes the UK ME Biobank as well as a collaborative research project using data and samples from You+ME co-led by Ass Prof Nicholl and Professor Paul Fisher at La Trobe University.
The Australian National University, Bio21/University of Melbourne, British Columbia Women’s Hospital, CureME, London School of Hygiene and Tropical Medicine, Macquarie University, Murdoch Children’s Research Institute and the Open Medicine Foundation are also involved in the research project.
