Australian ME/CFS biobank awarded to research team which includes Emerge Australia!
Emerge Australia is excited to announce that we are a key part of the team that has been awarded a $1million grant from philanthropic trust the Mason Foundation to establish the first Australian ME/CFS Biobank and patient registry. The grant consists of two components: the biobank and patient registry, and a research project which uses the samples stored in the biobank. Taken together the two components which make up this landmark project will help biomedical researchers advance our understanding of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The biobank and patient registry will be led by Emerge Australia, partnering with the Australian Red Cross Blood Service, Solve ME/CFS Initiative (SMCI) in the US, and the UK ME Biobank (UKMEB), making this a global project. This innovative project will make use of existing Australian Red Cross Blood Service 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 will utilise 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.
The grant will also support 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 which is still widely misunderstood both by the community in general and by clinical professionals.
It goes without saying that we are absolutely 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.
Chief Investigators on the project are Dr Heidi Nicholl, CEO, Emerge Australia and Professor Paul Fisher, La Trobe University.
Co-investigators are from Australian National University (ANU); Bio21/University of Melbourne; BC Women’s Hospital in Canada and London School of Hygiene and Tropical Medicine (LSHTM); CureME research group, Macquarie University; Murdoch Children’s Research Institute and Victorian Paediatric Rehabilitation Service; Open Medicine Foundation (OMF); Solve ME/CFS Initiative; UKMEBiobank (UKMEB) & LSHTM.
How can I get involved?
We have a few logistics to get into place before the project launches properly but we have set up a specific mailing list so that you can sign up and let us know that you’d like to receive further information specific to the biobank and registry.
You can sign up by clicking here.
We will also, of course, keep everyone on our usual mailing list updated and we will keep people informed on our usual social media (Facebook and Twitter) and on the Emerge Australia website.
The expected timeline is that we are hoping to hire a biobank manager in the next few weeks with the project launching properly in October 2019.
What is a Patient Registry?
A patient registry is a database of patients which 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 Emerge Australia / Mason Foundation 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 organized 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 standardized 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. 
1. 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 Sep. Defining Patient Registries and Research Networks. Available from: https://www.ncbi.nlm.nih.gov/books/NBK164514/
What is a Biobank or Tissue Bank?
In the soon to be established Australian ME/CFS biobank this 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 may extend to other tissues including things like biopsied muscle samples (muscle ‘snips’).
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.
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