Emerge Australia's new registry and biobank to include long COVID participants

Article submitted by: Emerge Australia

In October 2023, Emerge Australia launched the new Australian ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Long COVID Registry and Biobank (AusME). This built on the existing You+ME Registry to create the most comprehensive resource available to researchers studying ME/CFS in Australia, with the new Registry including Long COVID.

The expansion of the ME/CFS Registry and Biobank to include people with Long COVID was essential, given recent evidence shows approximately 50 per cent of people diagnosed with Long COVID will go on to satisfy ME/CFS diagnostic criteria. The study of Long COVID in addition to ME/CFS presents a unique opportunity for researchers to:

• Study the acute/early stages of ME/CFS progression
• Identify factors that might predispose individuals to develop ME/CFS or Long COVID after a viral infection
• Compare the pathophysiological similarities and differences between Long COVID and ME/CFS
• Assess the long-term economic and societal impacts of both Long COVID and ME/CFS.

AusME uses a secure web-based portal where people with ME/CFS, Long COVID and healthy controls can participate in medical research studies. They complete a series of online surveys, every three months, about their diagnosis, symptoms, medications and quality of life, enabling collection of important longitudinal data. Participants can also choose to donate blood to the biobank.

Participation in the AusME Registry can be from the comfort of one's home, allowing both those who are mildly affected and those who are severely affected to participate. Ethically approved research projects access data/blood samples in a deidentified format (meaning no one sees personal information) once they have been granted access by Emerge Australia’s Medical and Scientific Advisory (MSAC) and Biobank Access Committees.

AusME is a collaboration between Emerge Australia and several national universities, including La Trobe, Macquarie, Melbourne, Australian National University and the Murdoch Children’s Research Institute. It is generously funded by the Mason Foundation/Equity Trustees. The AusME Registry continues to be a patient-driven initiative, with many Emerge Australia staff living with ME/CFS, extensive platform testing by patients, and people with lived experience sitting on MSAC.

For more information, visit the AusME Registry & Biobank.