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?)

 

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

 

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?"

 

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

 

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.

 

Do you think that the existence of the LSHTM biobank has led to ME/CFS studies being done that otherwise wouldn't have been done?

 

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."

 

I’m a severely affected patient who would like to be ‘recruited’ into a study - how do I go about getting into one?

 

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.

 

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

 

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!).

 

These NIH Centres project is very new but we have been and continue to be in contact with a number of researchers from across the USA, and are always open for potential collaborations.

 

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."

 

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