Australia - Mason Foundation to investigate viability of ME/CFS Biobank - update - funding awarded for biobank

Most of Australia’s medical research funding for ME and CFS comes from the Mason Foundation, who are currently looking at whether they will fund a biobank or a patient registry for Myalgic Encephalomyelitis and/or chronic fatigue syndrome samples. Last week the Mason Foundation updated stakeholders on the decision-making process.

This is important because if a biobank goes ahead it will mean less money is directed to research projects. A biobank or patient registry may make it easier for researchers, even though Australian researchers say it is isn’t difficult to find patients to sample and it is much harder to find matching healthy control subjects.
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https://meaustralia.net/2018/05/15/mason-foundation-explores-me-and-cfs-biobank-for-australia/
 
Article on on #MEAction website
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“Stakeholders and biobank experts generally agree that it is feasible to establish a biobank and/or patient database in Australia and that these options had potential to advance ME/CFS research and could attract new researchers to the field. However, in a 2017 workshop, stakeholders and biobank experts confirmed that further work was required to see whether there would be sufficient market demand for a sustainable ME/CFS biobank in Australia,” Mason Foundation draft recommendations.

In last week’s meeting, a stakeholder who is on the NHMRC advisory committee said that the NHMRC are also looking at funding a biobank and asked the Mason Foundation to consult with the NHMRC.

The consumer representatives’ main concerns are about the standardisation of the samples, questioning which criteria patients’ samples must meet.

Researchers and consumer representatives raised questions about the details, for example, where would a biobank be located; how would samples be distributed; what outcomes would be expected (as a small scale biobank would focus on one question); and how much would it cost to access samples."

full article here:
https://www.meaction.net/2018/06/22/australia-mason-foundation-explores-funding-me-and-cfs-biobank/
 
"
The Mason Foundation – ME/CFS research grants

The Mason Foundation ME/CFS research grants are overseen by a National Medical Advisory Panel.

To deliver on its goal into the future, the Mason Foundation has identified the need to enhance its current grants program. For more information download the guidelines

Applications open 6 August and close 10 September.

Apply Now.

In addition to the 2018 ME/CFS call for research grant applications, it is also the intention of The Mason Foundation to issue an Expression of Interest (EOI) for the establishment and operation of a patient registry/database for ME/CFS research and a limited scale biobank. Research grant applications leveraging these resources in future will be a priority. It is anticipated that EOIs will be sought towards the beginning of 2019."

http://www.eqt.com.au/charities-and-not-for-profits/grants/medical-research-and-health
 
The Mason Foundation are offering $1m over 5 years for a biobank or patient registry.

The Mason Foundation are one of the biggest funders of Australian ME and CFS research, funding work at Griffith, ANU, Melbourne but also Lloyd’s GET/CBT training modules and dodgy Xbox studies.

The Mason Foundation did lots of consulting last year, including a workshop.

https://meaustralia.net/2019/04/03/1m-biobank-project-for-australia/
 
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.
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https://emerge.org.au/australian-me...esearch-team-which-includes-emerge-australia/
 
We’re really excited about this announcement! A huge amount of work went into bringing these groups together. Not just Emerge Australia, SMCI and UK Biobank, but also the research groups: La Trobe Uni, ANU, Murdoch Children’s Research Institute etc. Emerge Australia’s CEO, Dr Heidi Nicholl, has run a biobank in the past (in the UK), so all three groups involved in the biobank and patient registry bring expertise, which is a real strength of this project. And it’s really exciting to see this global collaboration. We need more of this!
 
The link in @Andy 's post above includes the following information regarding participating in the biobank:

Emerge said:
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.
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Not so many outlets actually: the Sydney Morning Herald and The Age are both published by the same publisher. The SMH has local articles more pertinent to NSW and The Age to Victoria. Otherwise they are the same. The article is also hidden away in the Brisbane Times and WAtoday, the other two papers in the group. All these papers have a readership quite a lot smaller than the tabloids.
 
BruceInOz said:
The link in @Andy 's post above includes the following information regarding participating in the biobank:
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Just to clarify (because there has been some confusion elsewhere): signing up via that link isn’t signing up to the biobank or registry. It’s just signing up to a mailing list which will provide updates about the project. Registering for the biobank/registry will come later. Signing up to the mailing list will keep you in the loop for when registrations open.
 
A different article
A bold decision to back a plan for a breakthrough
Less than 1% of the population experiences the debilitating effects of Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS). But for those who do, the condition is high impact, ongoing and life changing.

Of those thousands of people who live with the condition, that impact can be on brain function, the gut, immune, endocrine and cardiac systems. What most people who know anything about the disease – or people with it – know is that it results in persistent disabling fatigue, muscle and joint pain, headaches and more. The severity can wax and wane. It is frustrating, confusing and usually only diagnosed after long periods of ongoing illness.

Dr Heidi Nicholl, CEO of Emerge Australia – the national patient organisation representing people living with ME/CFS said: “It is a condition which is still widely misunderstood by the general community and by clinical professionals,” she said.

The challenge for medical professionals is that there still is no universally accepted definition, and diagnosis relies on a process of elimination of all other possible causes of the symptoms that patient has over time.

Research into the condition has been limited and funding scarce. This is common for lesser known medical conditions – just as it is for less profile (or more challenging) social problems.

Over the past decade, what this has meant on the ground is that government has been able to support one research project, one scholarship and two research fellowships through the National Health and Medical Research Council (NHMRC). The ME/CFS research ‘sector’ (such that it is) can be described as small, fragmented and under-resourced for its task.

It is into this space that philanthropy can step in and pick up the challenge - where government and public funding, with its imperative of giving funding priority to the problems that affect the most (or cost the most) cannot always meet the need.
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full article
https://www.eqt.com.au/about-us/med...ld-decision-to-back-a-plan-for-a-breakthrough
 
Merged thread

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$1 million Grant Awarded for
Australian Biobank and Registry
Solve M.E. is delighted to congratulate our partners at Emerge Australia and La Trobe University for their $1 million grant from philanthropic trust the Mason Foundation to establish the first Australian ME/CFS Biobank and patient registry! The biobank will enable a collaborative research project spanning multiple institutions and create a rich repository for future research.

We are honored to be co-investigators on this grant, alongside our collaborators at UK ME Biobank (UKMEB), led by the CureME team, and other dedicated partners. Collectively we are committed to developing a unified, global approach to ME/CFS research.

As many of you know, we have been developing a symptom tracking app that will enable patients to register and track their symptoms on an ongoing basis. 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 app, along with other web-based tools and established infrastructure from the UKMEB, will be a key component of the Australian biobank and registry.

We are excited by the potential for this project to accelerate ME/CFS research around the world!

Read more about Emerge, La Trobe and the $1 million grant from the Mason Foundation in the Sydney Morning Herald.

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Would like to see Canada involved. Maybe through Women's College Hospital's environmental illness unit in Toronto. Maybe through UBC at the complex chronic disease program. Though I think both those institutions still have some learning to do re: ME.

@Action CIND
 
What worries me is anyone can use the app, so people misdiagnosed could well use it. Are we just going to end up with nothing meaningful from information gathered?
 
Sly Saint said:
A different article
A bold decision to back a plan for a breakthrough

full article
https://www.eqt.com.au/about-us/med...ld-decision-to-back-a-plan-for-a-breakthrough
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In the meantime, the Foundation will continue to fund annual research grants (the next open grants round due to open in September 2019). The strategy review has led to a shift in focus to have less individual grants, but each grant to be higher in dollar amount and to come with a longer term funding commitment. Going forward, research grant applications leveraging the newly created patient registry and biobank resources will be a priority.
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