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Changes in the CMRC executive board (incl. Peter White)

Scarecrow

Revolting Peasant
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The draft minutes of the last board meeting have been circulated but are yet to be posted on AfME's website.

There have been two resignations. The board would like to bring in a genomics expert and an MRC-funded researcher to fill the vacancies.

The two outgoing members are Peter White and Paul Moss.
 

Sasha

Fine, thank you
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@Sasha

The minutes are on the MEA site. I tried your link and it does work: just takes a while to open the doc.

Oh! I didn't notice there was a doc that downloaded. I was expecting to see a webpage.

Thanks!

I see on MEA FB that Montoya is headlining the October conference. Good to see US researchers coming over for this. I think the IiME conference raises the bar and it's good to have two conferences a year - it's a chance for new stuff to break and to get those international collaborations going.
 

Sasha

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There's actually some very interesting stuff in the minutes overall. Well worth reading the whole thing.

What's the Grand Challenge?
 

Scarecrow

Revolting Peasant
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It's great to see Peter White hitting the road :thumbsup:
If you look at the meeting minutes at the AfME link above, PDW was rarely there anyway, so no real surprise that he has gone.
Though it sounds like Paul Moss did some pretty good research.
Yes, and hopefully it's that which is responsible for keeping him too busy for the CMRC.
 

Scarecrow

Revolting Peasant
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What's the Grand Challenge?
I don't recall it from the any of the previous minutes but I don't have time to look through them again at the moment.

Did you see they are discussing a website, too? That should help with communicating CMRC activities.
 

Simon

Senior Member
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Monmouth, UK
Quick undigested post from me while my brain holds out. I've been a cheerleader for the CMRC but have been frustrated by the lack of output so far in terms on new well-funded high-quality studies. These minutes seem to take the bull by the horns.

Funding

SH (Stephen Holgate)has written to funders with some success. SH has approached a number of other organisations and one will be inputting into the conference and become members. SH has written to Wellcome Trust but has not had a response as yet. Hugh Perrry will make a personal approach.
Wellcome Trust are one of the big three funders and haven't come to play yet.
There needs to be further approaches to other mainstream funders as there remains a lack in involvement. .... SH will liaise with PL re NIHR and who else to approach.
NIHR is the huge NHS arm of UK research funding, focusing on clinical studies, and again haven't been involved much yet. PL is Paul Little.

Grand Challenge/establishing research priorities
I'd understood the Grand Challenge to be an 'omics-led approach (genomics, metabalomics etc) to the illness.
SH outlined previous discussions regarding the idea of a Grand Challenge which would significantly embed research in this field. SH would be willing to commit some funding to this but there will need to be greater investment if this is really going to be achieved. SH challenged members of the group to consider their role and how to take this forward.
Not quite sure what this means but sounds like a start, and a call to action.

There was another bit where they discussed identifying researchers who could be involved (in 'omics work?), a kind of scoping study - as well as what priorities should be.
added:
MRC rep reported that she has discussed with SC the potential to undertake a portfolio analysis to establish who is working in the area and related fields. This is a significant gap and would benefit from use of a platform such as UBER Research which has been used previously in epigenetics globally vs UK vs MRC. Rep stated that the MRC would be willing to coordinate this.

See also this on patient/public involvement:
The Board discussed the importance of effective engagement that creates value i.e. bringing together patients/researchers/clinicians to go through a rigorous process to come up with some shared priorities for research that has been through a to enhance future grant applications. This has been very effective in other areas such as MS working in conjunction with the James Lind Alliance. This will form a third element of the Grand Challenge and any seed funding application.

and this
The IOM report that was released is watershed in the US and this can be used to help drive this Challenge forward. SH will write to each of the Boards to ask them to commit finances to enable this to happen.
I assume that's writing to all the MRC funding boards to ask for cash, which could potentially be big.

Bit short of detail here, but seems we mmay have tantalising glimpses of action

Outta gas. More later, maybe.
 
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Sasha

Fine, thank you
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Did you see they are discussing a website, too? That should help with communicating CMRC activities.

Yes, that will be a big help - at the moment you have to go googling for bits and pieces about them which are splattered all over.
 

Sasha

Fine, thank you
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Thanks @Simon - very useful to have your interpretation.

The James Lind Alliance are very interesting and I've long thought they could play an important role for us:

James Lind Alliance said:
The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicianstogether to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important.

This information will help ensure that those who fund health research are aware of what matters to both patients and clinicians.

This website contains information for those interested in finding out more about the JLA, and those who wish to become involved.

Click here to hear about what the JLA does, and click here to watch a video describing the JLA's approach to stakeholder involvement in research priority setting.
 

Scarecrow

Revolting Peasant
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Would they fund a NZ researcher in genomics, proteomics, metabolomics? We have one fighting for funding in ME/CFS who is seriously top notch. Prof Warren Tate. Google him. Too tired to say more.
The CMRC is for UK-based practitioners only. :(

Also they don't actually award research funds but one of their aims is to help researchers to access funds by improving the quality of applications.
 

Simon

Senior Member
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Location
Monmouth, UK
Hugh Perry added there is likely to be a higher proportion of observational studies that are taking place but the need is for experimental medicine trials as this is significantly lacking in this field. This analysis would prove helpful in really highlighting the gaps and inform work of the CMRC to address this with mainstream funders and to better understand the biology behind symptoms to inform interventions.
Step forward the Rituximab trials, both the large multi-clinic Norwegian study and maybe even more the UK IiME-funded studies that focus on trying to identify who responds and why by getting up close and perrsonal with B-cell biology.
 
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