In August 2019, we were excited to announce that Emerge Australia is to be a key part of the team awarded a $1million grant from philanthropic trust, the Mason Foundation, to establish the first Australian ME/CFS biobank and patient registry.

Join the You+ME Registry

The grant consists of two components: the biobank and patient registry, and a research project that uses the samples stored in the biobank. Taken together, these two components, which make up this landmark project, will help biomedical researchers advance our understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The Mason Foundation-funded biobank and patient registry will be led by Emerge Australia, partnering with Solve ME/CFS Initiative (SMCI) in the US, and the UK ME Biobank (UKMEB), making it a global project. This innovative project will make use of existing Australian Red Cross Lifeblood resources, and will also benefit from the infrastructure of the UKMEB and resources being developed by SMCI. The biobank will store blood samples of ME/CFS patients and matched healthy people, making these samples very useful for researchers.

The patient registry utilises the latest technology available, enabling patients to register and track their symptoms via an app. This will allow researchers to access standardised, anonymous information about patients’ symptoms, which can be analysed for a more detailed understanding of the condition and how symptoms change over time.

Research project

The grant also supports a collaborative research project involving several institutions (see full list below). This project, led by Professor Paul Fisher from La Trobe University, will use the blood samples stored in the biobank and data from the patient registry.

Access to well-characterised samples and ongoing data from the patient registry promises to be an invaluable resource for researchers. We are excited by the potential for this project to help accelerate ME/CFS research in Australia and around the world.

While there have been some recent advances in our understanding of the biomedical basis of ME/CFS, more research needs to be undertaken to find effective diagnostics and treatments for a condition that is still widely misunderstood both by the community in general and by clinical professionals.

Emerge Australia is thrilled to be a part of this initiative and we are immensely grateful for this much-needed funding from the Mason Foundation for establishing the biobank and for supporting further research.

Partner institutions

Chief investigators on the project are Associate Professor Heidi Nicholl, CEO, Emerge Australia and Professor Paul Fisher, La Trobe University.

The full list of co-investigators are:

• Australian National University (ANU)
• Bio21/University of Melbourne
• BC Women’s Hospital in Canada
• Emerge Australia
• La Trobe University
• London School of Hygiene and Tropical Medicine (LSHTM) CureME research group
• Macquarie University
• Murdoch Children’s Research Institute (MCRI) and Victorian Paediatric Rehabilitation Service
• Open Medicine Foundation
• Solve ME/CFS Initiative

How can I get involved? 

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.

Sign up for the registry here.

The Biobank portion of this project is still in development at the moment, with operations targeted to launch fully in 2021. You can keep up to date with the specifics of this project – and register your interest to participate – via our dedicated Biobank News mailing list.

Sign up here.

Of course, we will also keep all of our subscribers, members and supporters updated via our newsletter, journal, social media (Facebook and Twitter), and on this website.

If you have any questions about participating in the Biobank research or you are experiencing any issues with your registration please contact us here.

What is a patient registry?

A patient registry is a database of patients that stores details about their medical history in relation to a particular disease or condition. A registry may be used to identify patients who are willing to take part in research, or the data may be aggregated and used on its own. In the soon to be established Mason Foundation Biobank and patient registry, we plan to partner with Solve ME/CFS and CureME – the London ME/CFS Biobank – to encourage Australian patients to sign up for the registry and to track their symptoms in an app.

Patient registries have been defined as ‘an organised system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).’* In brief, a patient registry is a collection – for one or more purposes – of standardised information about a group of patients who share a condition or experience.

Patient-powered patient registries (PPRs)

PPRs are similar in many ways to researcher-generated patient registries in definition, purpose, and features. At times, these registries are somewhat indistinguishable from traditional registries, with one exception: in patient-powered patient registries, patients and family members ‘power’ the registry by managing or controlling the collection of the data, the research agenda for the data, and/or the translation and dissemination of the research from the data.

*Workman TA. Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2013 Sept, Defining Patient Registries and Research Networks. Available from here.

What is a biobank or tissue bank?

The Mason Foundation-funded biobank will be the storage of donated blood from patients who have consented to the process and who have given details of their medical history. In the future, tissue banking could extend to other tissues and we may collect things like faecal samples, urine, biopsied muscle samples (muscle ‘snips’) etc.

The main activity of a tissue or biobank is the harvesting, processing, storage and transportation of human tissues for clinical or research use. Low temperature storage of processed tissue is commonly used to preserve the biological data available in the samples. Tissue banking is a complex system and needs high levels of technical expertise and skilled personnel to function properly, and is usually done in a dedicated facility. We will achieve this by partnering with an organisation who have experience with tissue banking while Emerge Australia will co-ordinate both patient recruitment and scientists applying to use the materials.

Strict laws and stringent regulations about collection and storage of human material helps to streamline the process of tissue banking, and also keeps the process safe for donors, researchers and the community as a whole.

[Based on Narayan RP. Development of tissue bank, Indian J Plast Surg. 2012;45(2):396–402. doi:10.4103/0970-0358.101326]