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

https://meaustralia.net/2018/05/15/mason-foundation-explores-me-and-cfs-biobank-for-australia/

 

A patient registry makes sense. A biobank is less useful until we get an established and funded research program.

 

Article on on #MEAction website
"
“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/

 

https://emerge.org.au/australian-me...esearch-team-which-includes-emerge-australia/

 

More on the Mason Foundation, Emerge, and the Biobank and patient registries.

https://www.theage.com.au/politics/...-they-re-close-to-a-cure-20190808-p52f3g.html

 

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:

 

Looks like the article is being reused by different outlets, https://www.smh.com.au/national/vic...-they-re-close-to-a-cure-20190808-p52f3g.html

 

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.

 

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

full article
https://www.eqt.com.au/about-us/med...ld-decision-to-back-a-plan-for-a-breakthrough

 

Merged thread



$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.

 

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

 

I'll be doing a Q&A with Dr Heidi Nichol from Emerge Australia soon, thread to collect questions, either about this news or Emerge's work, here, https://www.s4me.info/threads/quest...heidi-nicholl-of-emerge-australia-2019.10813/

 

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?

 

Some of those concerns are addressed in @Andy 's Q&A with Solve ME
https://www.s4me.info/threads/video...r-from-solve-me-cfs-initiative-may-2019.9425/