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Emerge Australia

1800 865 321

Emerge Australia

1800 865 321

Frequently Asked Questions

Top FAQ's

Before signing up, it's important that you read our Information Statement. The Information Statement contains details about the AusME Registry project, data collection, data storage, privacy measures, and the risks and benefits of participation. 

The AusME platform will enable researchers to access data and information more easily, thus promoting better research outcomes. The expansion opens doors for increased collaboration, knowledge sharing, and research progress for both ME/CFS and Long COVID. 

Yes, you can click the “Save and Continue later” button to receive a personalized link in your inbox, allowing you to continue where you left off when you have the time and capacity. Please use this feature between survey pages (a known current limitation of the platform's software).

Think of the You+ME to AusME transition as a continuation of your journey. All participants are required to read the information statement, give consent, and complete the Onboarding survey set. 

For those who are existing You+ME participants, the onboarding survey set allows us to get an accurate, up-to-date snapshot of your geographical location, age, diagnosis, as well as symptom profile and severity. 

We use Zoho, a third-party vendor for cloud storage and computing services, to assist with the communication, data collection, storage, and processing of all AusME Registry data. Zoho was vetted for compliance with their security and privacy standards. Below is a summary of Zoho's security:
  • An encrypted database in physical data centres currently located in Sydney and Melbourne, Australia
  • HIPAA compliant
  • Assessed to comply with ISO 9001, 27001, 27017, 27018, and 200000, SOC 1, 2, and 3, and Certified Senders Alliance accreditation (CSA)
  • Data is transmitted from the AusME platform to the backend database using industry standard TLS/SSL encryption protocols
If you would like more information about Zoho's security you can visit the following website: https://www.zoho.com/security.html
 
Please know that while we cannot provide an absolute data security guarantee, your personal information will be handled using the best industry standard systems. You can read our Privacy Policy here.

About the AusME Registry

The AusME expansion is driven by the substantial overlap between ME/CFS and Long COVID, making it valuable to have a single registry for both conditions. We believe that the knowledge gained from one condition can inform and enhance research in the other, leading to more comprehensive insights and evidence-based research. 

The AusME platform will enable researchers to access data and information more easily, thus promoting better research outcomes. The expansion opens doors for increased collaboration, knowledge sharing, and research progress for both ME/CFS and Long COVID. 

Participating in the AusME Registry

You can take as long as you need to complete the initial onboarding survey set.

Study visits are survey sets that are repeated in 3 monthly intervals. They allow researchers to view snapshots of how your health/symptoms change over time.

When a Study visit opens, you'll be informed by email. Each study Visit opens for 14 days but if you need to skip a study visit in order to prioritise your health, you can do so with no negative impact on your data or your opportunity to participate in future research studies. Just pick up where you left off when the next study visit opens in another 3 months time.

Participants will be prompted to complete a study visit every 3 months (90 days). If you are unable to complete a study visit for whatever reason, you can skip it without impacting your data or future research participation.

Yes, you can click the “Save and Continue later” button to receive a personalized link in your inbox, allowing you to continue where you left off when you have the time and capacity. Please use this feature between survey pages (a known current limitation of the platform's software).

We recognize that some of the questions within the AusME Registry surveys are quite subjective and may be interpreted differently by patients based on their unique experiences with ME/CFS or Long COVID. For example, one persons ‘severe' may be the equivalent to another persons ‘very severe'.
 
Approved Researchers, who utilize this data for their work, are aware of the subjective nature of certain data points. They approach these responses by considering them alongside other questionnaires and biological data, enabling a more comprehensive analysis.

Moving to the AusME platform has allowed us to significantly improve the user experience and design it with the energy limitations of people with ME/CFS and Long COVID in mind.

Some new features we now have in place have been implemented so that participants can be better informed of the energy cost that undertaking the surveys may have. These include:

  • A progress bar at the top of the surveys
  • Survey ‘check in' pages with visual checklists and approximate completion times for any remaining surveys
  • A Save and Continue later button at the top of the screen (that when clicked will send you an email with a link so that you can return to the survey at a later date).

 

Please note: At this time, the Save and Continue later button only works properly when you are in between survey pages (a known platform limitation that we hope to fix in the near future). So when you see a check in page we encourage those participants with ME/CFS and/or Long COVID to assess their energy levels prior to commencing the next survey and decide whether or not to use the Save button at that time.

You+ME to AusME Transition

Think of the You+ME to AusME transition as a continuation of your journey. All participants are required to read the information statement, give consent, and complete the Onboarding survey set. 

For those who are existing You+ME participants, the onboarding survey set allows us to get an accurate, up-to-date snapshot of your geographical location, age, diagnosis, as well as symptom profile and severity. 

Your You+ME data is securely stored and will remain accessible for research purposes. If you choose to sign up to AusME Registry, a unique identification number will be used to link your previously contributed You+ME data to all future data that you contribute to the AusME Registry.

Moving to the AusME platform has allowed us to significantly improve the user experience and design it with the energy limitations of people with ME/CFS and Long COVID in mind.

Some new features we now have in place have been implemented so that participants can be better informed of the energy cost that undertaking the surveys may have. These include:

  • A progress bar at the top of the surveys
  • Survey ‘check in' pages with visual checklists and approximate completion times for any remaining surveys
  • A Save and Continue later button at the top of the screen (that when clicked will send you an email with a link so that you can return to the survey at a later date).

 

Please note: At this time, the Save and Continue later button only works properly when you are in between survey pages (a known platform limitation that we hope to fix in the near future). So when you see a check in page we encourage those participants with ME/CFS and/or Long COVID to assess their energy levels prior to commencing the next survey and decide whether or not to use the Save button at that time.

The transition to the AusME Registry is not mandatory. It's a choice, and we welcome You+ME participants to continue their journey with us, adding to their already valuable contributions to research.

To transition, simply sign up for the AusME Registry, and you'll be guided through the necessary steps, which include updating specific information to enhance the accuracy and relevance of your data.

When Approved Researchers are granted access to Registry data for their projects, they receive not only your AusME data but also any data you previously provided via the You+ME platform, ensuring a comprehensive dataset for their research.

Privacy and Data Protection

We take the security and privacy of your data very seriously. The AusME platform uses technical, physical, and administrative controls designed to protect Participant data from unauthorized access or disclosure and to regulate the appropriate use of the data contributed. We do this by employing the following measures:
  • All Registry data is transmitted, stored, and processed in a secure environment and using encryption
  • We ensure your data is protected with appropriate safeguards in accordance with applicable privacy laws
  • Personal Data is accessible only to personnel with direct responsibility for overseeing the AusME Registry platform and requires multifactor authentication and appropriate user rights to gain access
  • Data transferred to researchers is 100% deidentified
We use Zoho, a third-party vendor for cloud storage and computing services, to assist with the communication, data collection, storage, and processing of all AusME Registry data. Zoho was vetted for compliance with their security and privacy standards. Below is a summary of Zoho's security:
  • An encrypted database in physical data centres currently located in Sydney and Melbourne, Australia
  • HIPAA compliant
  • Assessed to comply with ISO 9001, 27001, 27017, 27018, and 200000, SOC 1, 2, and 3, and Certified Senders Alliance accreditation (CSA)
  • Data is transmitted from the AusME platform to the backend database using industry standard TLS/SSL encryption protocols
If you would like more information about Zoho's security you can visit the following website: https://www.zoho.com/security.html
 
Please know that while we cannot provide an absolute data security guarantee, your personal information will be handled using the best industry standard systems. You can read our Privacy Policy here.

Other questions

To learn more about the AusME Registry, please contact the AusME team at Emerge Australia (information.ausme@emerge.org.au).

Top FAQ

Top FAQ's

Before signing up, it's important that you read our Information Statement. The Information Statement contains details about the AusME Registry project, data collection, data storage, privacy measures, and the risks and benefits of participation. 

The AusME platform will enable researchers to access data and information more easily, thus promoting better research outcomes. The expansion opens doors for increased collaboration, knowledge sharing, and research progress for both ME/CFS and Long COVID. 

Yes, you can click the “Save and Continue later” button to receive a personalized link in your inbox, allowing you to continue where you left off when you have the time and capacity. Please use this feature between survey pages (a known current limitation of the platform's software).

Think of the You+ME to AusME transition as a continuation of your journey. All participants are required to read the information statement, give consent, and complete the Onboarding survey set. 

For those who are existing You+ME participants, the onboarding survey set allows us to get an accurate, up-to-date snapshot of your geographical location, age, diagnosis, as well as symptom profile and severity. 

We use Zoho, a third-party vendor for cloud storage and computing services, to assist with the communication, data collection, storage, and processing of all AusME Registry data. Zoho was vetted for compliance with their security and privacy standards. Below is a summary of Zoho's security:
  • An encrypted database in physical data centres currently located in Sydney and Melbourne, Australia
  • HIPAA compliant
  • Assessed to comply with ISO 9001, 27001, 27017, 27018, and 200000, SOC 1, 2, and 3, and Certified Senders Alliance accreditation (CSA)
  • Data is transmitted from the AusME platform to the backend database using industry standard TLS/SSL encryption protocols
If you would like more information about Zoho's security you can visit the following website: https://www.zoho.com/security.html
 
Please know that while we cannot provide an absolute data security guarantee, your personal information will be handled using the best industry standard systems. You can read our Privacy Policy here.
About

About the AusME Registry

The AusME expansion is driven by the substantial overlap between ME/CFS and Long COVID, making it valuable to have a single registry for both conditions. We believe that the knowledge gained from one condition can inform and enhance research in the other, leading to more comprehensive insights and evidence-based research. 

The AusME platform will enable researchers to access data and information more easily, thus promoting better research outcomes. The expansion opens doors for increased collaboration, knowledge sharing, and research progress for both ME/CFS and Long COVID. 

Signing Up
Participating

Participating in the AusME Registry

You can take as long as you need to complete the initial onboarding survey set.

Study visits are survey sets that are repeated in 3 monthly intervals. They allow researchers to view snapshots of how your health/symptoms change over time.

When a Study visit opens, you'll be informed by email. Each study Visit opens for 14 days but if you need to skip a study visit in order to prioritise your health, you can do so with no negative impact on your data or your opportunity to participate in future research studies. Just pick up where you left off when the next study visit opens in another 3 months time.

Participants will be prompted to complete a study visit every 3 months (90 days). If you are unable to complete a study visit for whatever reason, you can skip it without impacting your data or future research participation.

Yes, you can click the “Save and Continue later” button to receive a personalized link in your inbox, allowing you to continue where you left off when you have the time and capacity. Please use this feature between survey pages (a known current limitation of the platform's software).

We recognize that some of the questions within the AusME Registry surveys are quite subjective and may be interpreted differently by patients based on their unique experiences with ME/CFS or Long COVID. For example, one persons ‘severe' may be the equivalent to another persons ‘very severe'.
 
Approved Researchers, who utilize this data for their work, are aware of the subjective nature of certain data points. They approach these responses by considering them alongside other questionnaires and biological data, enabling a more comprehensive analysis.

Moving to the AusME platform has allowed us to significantly improve the user experience and design it with the energy limitations of people with ME/CFS and Long COVID in mind.

Some new features we now have in place have been implemented so that participants can be better informed of the energy cost that undertaking the surveys may have. These include:

  • A progress bar at the top of the surveys
  • Survey ‘check in' pages with visual checklists and approximate completion times for any remaining surveys
  • A Save and Continue later button at the top of the screen (that when clicked will send you an email with a link so that you can return to the survey at a later date).

 

Please note: At this time, the Save and Continue later button only works properly when you are in between survey pages (a known platform limitation that we hope to fix in the near future). So when you see a check in page we encourage those participants with ME/CFS and/or Long COVID to assess their energy levels prior to commencing the next survey and decide whether or not to use the Save button at that time.

You+ME Registry Transition

You+ME to AusME Transition

Think of the You+ME to AusME transition as a continuation of your journey. All participants are required to read the information statement, give consent, and complete the Onboarding survey set. 

For those who are existing You+ME participants, the onboarding survey set allows us to get an accurate, up-to-date snapshot of your geographical location, age, diagnosis, as well as symptom profile and severity. 

Your You+ME data is securely stored and will remain accessible for research purposes. If you choose to sign up to AusME Registry, a unique identification number will be used to link your previously contributed You+ME data to all future data that you contribute to the AusME Registry.

Moving to the AusME platform has allowed us to significantly improve the user experience and design it with the energy limitations of people with ME/CFS and Long COVID in mind.

Some new features we now have in place have been implemented so that participants can be better informed of the energy cost that undertaking the surveys may have. These include:

  • A progress bar at the top of the surveys
  • Survey ‘check in' pages with visual checklists and approximate completion times for any remaining surveys
  • A Save and Continue later button at the top of the screen (that when clicked will send you an email with a link so that you can return to the survey at a later date).

 

Please note: At this time, the Save and Continue later button only works properly when you are in between survey pages (a known platform limitation that we hope to fix in the near future). So when you see a check in page we encourage those participants with ME/CFS and/or Long COVID to assess their energy levels prior to commencing the next survey and decide whether or not to use the Save button at that time.

The transition to the AusME Registry is not mandatory. It's a choice, and we welcome You+ME participants to continue their journey with us, adding to their already valuable contributions to research.

To transition, simply sign up for the AusME Registry, and you'll be guided through the necessary steps, which include updating specific information to enhance the accuracy and relevance of your data.

When Approved Researchers are granted access to Registry data for their projects, they receive not only your AusME data but also any data you previously provided via the You+ME platform, ensuring a comprehensive dataset for their research.

Privacy & Data Protection

Privacy and Data Protection

We take the security and privacy of your data very seriously. The AusME platform uses technical, physical, and administrative controls designed to protect Participant data from unauthorized access or disclosure and to regulate the appropriate use of the data contributed. We do this by employing the following measures:
  • All Registry data is transmitted, stored, and processed in a secure environment and using encryption
  • We ensure your data is protected with appropriate safeguards in accordance with applicable privacy laws
  • Personal Data is accessible only to personnel with direct responsibility for overseeing the AusME Registry platform and requires multifactor authentication and appropriate user rights to gain access
  • Data transferred to researchers is 100% deidentified
We use Zoho, a third-party vendor for cloud storage and computing services, to assist with the communication, data collection, storage, and processing of all AusME Registry data. Zoho was vetted for compliance with their security and privacy standards. Below is a summary of Zoho's security:
  • An encrypted database in physical data centres currently located in Sydney and Melbourne, Australia
  • HIPAA compliant
  • Assessed to comply with ISO 9001, 27001, 27017, 27018, and 200000, SOC 1, 2, and 3, and Certified Senders Alliance accreditation (CSA)
  • Data is transmitted from the AusME platform to the backend database using industry standard TLS/SSL encryption protocols
If you would like more information about Zoho's security you can visit the following website: https://www.zoho.com/security.html
 
Please know that while we cannot provide an absolute data security guarantee, your personal information will be handled using the best industry standard systems. You can read our Privacy Policy here.
Other FAQ

Other questions

To learn more about the AusME Registry, please contact the AusME team at Emerge Australia (information.ausme@emerge.org.au).

Didn't find what you were looking for?

The AusME team are are always happy to answer your questions