Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

How much time and money per patient (very roughly) do you think the biobank would save researchers wanting to do an ME/CFS study? (That is, what would it have cost them in cash and effort to recruit suitable patients and get samples themselves?)
 
I believe you are doing home collection of blood samples. Does that mean that you are getting collections from severe patients?

Also as you collect blood have you considered potential effects due to patient exertion prior to the blood being drawn, does home collection help here?
 
Trish said:
Do you have other studies planned that you would like to do if funding were available?
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Of course! We would like to look in more detail at gene expression and immunological abnormalities to follow up our existing findings. We think there is also more work to be done in genetic association and energy metabolism, to mention just a couple of areas.

-- Luis
 
I assume you want samples that are as 'clean' as possible, in the sense of recruiting patients who do not suffer from other major co-morbid conditions. Do you also take into account and record any medications the patient are on?
 
This is one @Joel asked in the pre-event thread.
"I'd like to know if the biobank requires - or encourages - certain standards or research methodology and/or openness from researchers who want to use the samples?"
 
As data starts to be collected from various studies on the Biobank data would it be possible to create anonymous datasets that could be shared with the machine learning/data analytics communities so that a wide variety of analytic techniques could be used on the data?
 
Sasha said:
How much time and money per patient (very roughly) do you think the biobank would save researchers wanting to do an ME/CFS study? (That is, what would it have cost them in cash and effort to recruit suitable patients and get samples themselves?)
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We have done some work on this- some publications suggest that up to 90% saving can be made by using biobanks. (So our samples could cost as little as a tenth of what they might do if independently recruited.) This applies particularly to the severely-affected cohort, who are visited at home; a particularly difficult group to recruit but one that is vital to many studies).

Of course, estimates vary and it will depend on what procedures would be followed locally, but we are confident that it is a huge saving- and our biobank also comes with the advantage of known, approved protocols, harmonised with other efforts etc.

-- Jack/Eliana
 
One of the leading new researchers running one of the new NIH funded centres in the USA became interested in ME research when a doctor sent him a set of blood samples to analyse. Do you see it as part of your role to interest top researchers in relevant fields to come into ME research by alerting them to the existence of the Biobank material?
 
Andy said:
This is one @Joel asked in the pre-event thread.
"I'd like to know if the biobank requires - or encourages - certain standards or research methodology and/or openness from researchers who want to use the samples?"
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Yes - all applications for samples go through an ethical review and peer review process, to make sure that their studies are of the highest benefit to people with ME. We encourage in particular applications that fit with our research priorities:

  • testing or generating new hypotheses on the mechanisms (pathophysiology) of ME/CFS,
  • improving diagnosis (biomarkers) and phenotyping, and/or,
  • basic science, e.g. pharmacological in vitro studies potentially leading to clinical trials on therapeutic approaches
  • all done in an ethical, translatable manner.
 
The UK ME/CFS Biobank said:
We have done some work on this- some publications suggest that up to 90% saving can be made by using biobanks. (So our samples could cost as little as a tenth of what they might do if independently recruited.) This applies particularly to the severely-affected cohort, who are visited at home; a particularly difficult group to recruit but one that is vital to many studies).

Of course, estimates vary and it will depend on what procedures would be followed locally, but we are confident that it is a huge saving- and our biobank also comes with the advantage of known, approved protocols, harmonised with other efforts etc.

-- Jack/Eliana
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I’m a severely affected patient who would like to be ‘recruited’ into a study - how do I go about getting into one?
 
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Adrian said:
I believe you are doing home collection of blood samples. Does that mean that you are getting collections from severe patients?

Also as you collect blood have you considered potential effects due to patient exertion prior to the blood being drawn, does home collection help here?
Click to expand...

Yes! We are one of the only collections in the world to collect from severely-affected participants in the home, and the only to do it systemically.

We also try to arrange appointments so that clinical assessments and blood collection are done at different times, to mitigate the potential effects of exertion on samples collected.
 
Andy said:
Another one asked on the pre-event thread, this time asked by @arewenearlythereyet
"I would like to know whether there are plans to resample patients that move from mild/moderate to severe to see if there are any measurable changes over time as the disease progresses."
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Not specifically re participants moving from mild/moderate to severe - but one of the reasons for doing a longitudinal study across is that naturally we would expect fluctuations in reported symptoms / clinical assessment over time, that we can then measure against the samples collected.

-- Luis
 
The UK ME/CFS Biobank said:
We have done some work on this- some publications suggest that up to 90% saving can be made by using biobanks. (So our samples could cost as little as a tenth of what they might do if independently recruited.) This applies particularly to the severely-affected cohort, who are visited at home; a particularly difficult group to recruit but one that is vital to many studies).

Of course, estimates vary and it will depend on what procedures would be followed locally, but we are confident that it is a huge saving- and our biobank also comes with the advantage of known, approved protocols, harmonised with other efforts etc.

-- Jack/Eliana
Click to expand...

Thank you - that's very interesting. Are you able to say what that means in terms of absolute cash, rather than relatively speaking? I don't have any sense of what the normal costs would be (I suspect that they're higher than most patients would think!).
 
Couple more asked by others:

@BurnA asked "I wonder are they aware of Ron Davis recent remarks about storage of samples and how it can impact tests, and whether their storage conditions/ sampling collection procedures facilitate all possible tests, including any newer tests."

@Cheshire asked "I suppose different tests need a different amount of blood to be run (not sure anyway). What volume of blood is collected from a donor? On average, how many tests can be done with one donor?"

@Aimossy asked "Is there anything they are able to tell us about what they are finding in their work? If possible."
 
Sasha said:
Thank you - that's very interesting. Are you able to say what that means in terms of absolute cash, rather than relatively speaking? I don't have any sense of what the normal costs would be (I suspect that they're higher than most patients would think!).
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The cost of collecting samples is up to £2500 per participant. It's difficult to say what the costs would be for a new project and it would vary depending on a number of factors, but it would be several times that, we think.

-- Jack
 
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