Behind every data point, there's

a person, a story, and a chance

for a better tomorrow.

Your unique experiences and insights matter, and your participation only accelerates our progress in advancing knowledge. Together, we can work toward a brighter future for those affected by ME/CFS and long COVID, offering hope and support to countless individuals.

Join the AusME registry today and help us make a difference.

1985

Participants

Currently contributing to the AusME Registry

1639

ME/CFS

201

Long COVID

133

Healthy Volunteers

Updated: 26th November, 2024

18 projects

Australia-wide

Utilising the AusME Registry and Biobank samples and data for ME/CFS and long COVID research

Our Mission

“To create a comprehensive and valuable resource consisting of both data and biospecimen samples that will be used facilitate high-quality, impactful research into ME/CFS and long COVID”

What is the AusME Registry?

The Australian ME/CFS and Long COVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS and long COVID, as well as healthy volunteers.

The data contributed by participants to the AusME Registry serves as a valuable resource, available for Approved Researchers to utilize for their ME/CFS and long COVID studies. This project strives to promote a greater understanding of these conditions, with the ultimate outcome being better overall understanding of the cause and risk factors, more accurate diagnoses, enhanced treatment options, and an overall elevation in the quality of patient care.

By participating, you become a crucial part of this expanding repository of knowledge on ME/CFS and long COVID, making a meaningful difference in the lives of those affected by these conditions.

Why Join the AusME Registry?

Participating in the AusME Registry is the single easiest way to be involved in ME/CFS and long COVID research!

Empower Research

By contributing the often overlooked intricacies of your lived experience with these conditions through the AusME Registry you can empower researchers, scientists, and healthcare professionals to explore new avenues for ME/CFS and long COVID treatment and support.

Be an AusME Biobank blood donor

AusME Registry participants have the option to voluntarily contribute blood samples for research. These biosamples, matched with registry data, can significantly enhance our understanding of ME/CFS and long COVID, aiding more precise research and treatment. Blood donation is not obligatory for AusME Registry participation.

Be Informed

Based on the data you contribute, you will be directly informed of other research studies that are recruiting that you may be eligible for.

“Nobody knows the lived experience of ME/CFS or long COVID better than those who have it, and research can only go so far without your help.”

What's Involved?

Step 1

Read our Participant Information Statement and, if you so choose, give consent to participate.

Step 2

Complete the AusME onboarding surveys where you will contribute information regarding your demographics, health history, symptoms, treatments, and more.

Step 3

Check in with us every 3 months for a voluntary Study Visit, or skip if you are unable to complete it.

Your Privacy is Our Priority

We are committed to the security and privacy of any data you contribute to the AusME Registry

All data collected via the AusME Registry platform are stored indefinitely in an Australian-based data centre that adheres to the most stringent of security protocols and is HIPAA compliant.

All personal identifiers such as name, email, and date of birth are removed before sharing the data to Approved Researchers and their studies.

Developed with YOU in Mind

All surveys can be saved and done at your own pace, in multiple sittings*. Their completion is voluntary and completely dependent on your ability to undertake the study visit, when available.

You can choose to withdraw from the AusME Registry at any time.

*Within the time constraints of the study visit

Every ME/CFS and long COVID patient needs somewhere to turn.