Simon
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CMRC Board meeting: the Grand Challenge | Action for ME
The big news is that not only is the Grand Challenge going ahead, with support from Wellcome (without yet committing to funding), but also Prof George Davey Smith is keen to be involved.
Davey Smith is ridiculously talented (he has 150 papers that have each been cited over 150 times), and more laid back than most. Not found a photo of him in a tie yet. More to the point, he's a talented epidemiologist and genomicist, who's very focused on getting the right answer -even if that means telling everyone else they are wrong. Someone you definitely want researching your illness, especially if it's hard to crack.
From the minutes (download from AfME link above)
Grand Challenge
SH (Stephen Holgate) launched the challenge formally at the conference and this was followed up by George’s presentation at the end of day two. This is a national study collecting a large sample size (10,000+) of data focused on phenotyping and subtyping data using statistical analysis and bringing in genomics and other areas. George Davey-Smith is very keen to be involved.
The Wellcome Trust has a new collaborative awards scheme which AW’s colleague has flagged with SH. AW [Allison Wallace, Wellcome Trust observer on CMRC board] outlined that this fund is for a collaboration of this nature up to £4m. There will need to be a PI but each collaborator has to play a proactive part within the project. A meeting will be convened with the Wellcome Trust to explore further.
Following a meeting, an outline will need to be submitted to be reviewed by a Panel which will then potentially lead to an invite for application submission. There is a detailed process that will need to be considered.
A Grand Challenge meeting is being convened in April and an outline application could be considered for September 2016. SH will circulate the application process.
This could be a sole Wellcome Trust activity or a fully collaborative approach. DW highlighted that the MRC are awaiting the Comprehensive Spending Review to know budget. However, there are a number of opportunities that could be considered from the MRC in respect of funding. There is some feedback from previous unsuccessful applications that should be considered in respect of future applications.
SH highlighted the IOM and the statement that ME/CFS is not a single disease entity and there needs to be new methodology applied to phenotyping alongside the importance of genomics etc. NIH announced last week the setting up of a new panel to tackle ME/CFS.
SH identified the need to have a broader, more inclusive definition to enable the development of disease clusters will be an important consideration. This will more than likely provide the evidence that ME/CFS is not a single disease entity.
SH will circulate the IOM and associated reports. SH/EC (Esther Crawley) met this morning to develop an outline plan for a meeting in April in Bristol to bring together the critical scientists to deliver on this agenda. A list of invitees has been developed and SH will write to them. The first principle is that this is a very high-level science-led endeavour.
There will be one charity representation which the charities on the Board can agree. We also need to agree whether it is an adults/children’s or study of both - need to consider whether there may be different results between the adults and children. There will need to be a decision about collecting the right type of clinical data as well as phenotyping the patients by objective measurements (e.g. physiology – known immunology measures; sleep; cognition; psychological; post-exercise fatigue, pain amongst other components). SH highlighted that with the asthma study, cluster analyses was undertake on 300+ phenotypic data which identified 8 different types of asthma. Another consideration is what data is used (new vs previously collected) – need to ensure standard operating procedures.
The level of expertise needed will need to be high and across a range of areas to ensure we collect good clinical phenotypes. Therefore we will need good physiological phenotypers, need sleep and pain experts, as well as across all the ‘omics.
The partnership needs to be set up and then the project will be broken down into phases for implementation. SH has agreed to fund the meeting in April and associated costs
The big news is that not only is the Grand Challenge going ahead, with support from Wellcome (without yet committing to funding), but also Prof George Davey Smith is keen to be involved.
Davey Smith is ridiculously talented (he has 150 papers that have each been cited over 150 times), and more laid back than most. Not found a photo of him in a tie yet. More to the point, he's a talented epidemiologist and genomicist, who's very focused on getting the right answer -even if that means telling everyone else they are wrong. Someone you definitely want researching your illness, especially if it's hard to crack.
From the minutes (download from AfME link above)
Grand Challenge
SH (Stephen Holgate) launched the challenge formally at the conference and this was followed up by George’s presentation at the end of day two. This is a national study collecting a large sample size (10,000+) of data focused on phenotyping and subtyping data using statistical analysis and bringing in genomics and other areas. George Davey-Smith is very keen to be involved.
The Wellcome Trust has a new collaborative awards scheme which AW’s colleague has flagged with SH. AW [Allison Wallace, Wellcome Trust observer on CMRC board] outlined that this fund is for a collaboration of this nature up to £4m. There will need to be a PI but each collaborator has to play a proactive part within the project. A meeting will be convened with the Wellcome Trust to explore further.
Following a meeting, an outline will need to be submitted to be reviewed by a Panel which will then potentially lead to an invite for application submission. There is a detailed process that will need to be considered.
A Grand Challenge meeting is being convened in April and an outline application could be considered for September 2016. SH will circulate the application process.
This could be a sole Wellcome Trust activity or a fully collaborative approach. DW highlighted that the MRC are awaiting the Comprehensive Spending Review to know budget. However, there are a number of opportunities that could be considered from the MRC in respect of funding. There is some feedback from previous unsuccessful applications that should be considered in respect of future applications.
SH highlighted the IOM and the statement that ME/CFS is not a single disease entity and there needs to be new methodology applied to phenotyping alongside the importance of genomics etc. NIH announced last week the setting up of a new panel to tackle ME/CFS.
SH identified the need to have a broader, more inclusive definition to enable the development of disease clusters will be an important consideration. This will more than likely provide the evidence that ME/CFS is not a single disease entity.
SH will circulate the IOM and associated reports. SH/EC (Esther Crawley) met this morning to develop an outline plan for a meeting in April in Bristol to bring together the critical scientists to deliver on this agenda. A list of invitees has been developed and SH will write to them. The first principle is that this is a very high-level science-led endeavour.
There will be one charity representation which the charities on the Board can agree. We also need to agree whether it is an adults/children’s or study of both - need to consider whether there may be different results between the adults and children. There will need to be a decision about collecting the right type of clinical data as well as phenotyping the patients by objective measurements (e.g. physiology – known immunology measures; sleep; cognition; psychological; post-exercise fatigue, pain amongst other components). SH highlighted that with the asthma study, cluster analyses was undertake on 300+ phenotypic data which identified 8 different types of asthma. Another consideration is what data is used (new vs previously collected) – need to ensure standard operating procedures.
The level of expertise needed will need to be high and across a range of areas to ensure we collect good clinical phenotypes. Therefore we will need good physiological phenotypers, need sleep and pain experts, as well as across all the ‘omics.
The partnership needs to be set up and then the project will be broken down into phases for implementation. SH has agreed to fund the meeting in April and associated costs
