Hinxton scale development (new research outcome measure)

[Ravn]

Does anyone know more about this project?

I've seen it mentioned twice recently, by Simon Carding and by Avindra Nath. The impression they give is that they want this scale to become widely adopted by researchers - which means it's important they get it right

If they don't we might end up with something better than the Chalder questionnaire but still only going half way, like the DSQ which too often gets applied mindlessly in tick box fashion, without any deeper understanding of what it does or how or if it applies to the study in question. An additional risk is, as arguably seen with the DSQ, that wide adoption of a not-quite-right instrument can then stand in the way of developing a really good alternative

But back to the Hinxton. Sounds like they're combining objective and subjective outcome measures for this. For all I know they're doing a great job and they're concocting something actually useful on the level of the FUNCAP, which would be great - but the lack transparency makes me uneasy. Who else is involved? Who are they seeking feedback from? What's included in it? How are they validating it? Etc

Simon Carding mentions the Hinxton in the recording of the Genetics Centre of Excellence Webinar (see slide 20min in, originally posted in this thread)

https://www.youtube.com/watch?v=tAt9bwMfV4c

Another recent… Activity came about from the last colloquium that was held in June this year.
20:19
when a lot of clinicians and researchers got together to try and develop a consensus criteria
20:26
for undertaking clinical trials. And in particular, we're trying to develop what's called an outcome index value or measure
20:33
which has been used extensively in rheumatoid arthritis clinical trials. to accurately assess the impact of an intervention.
20:41
And we're hoping that if we reach this consensus, then clinical trials, wherever they are undertaken. will adopt the same measures as part of their trial.
20:51
Things we're looking at currently are the core measures objectivist, subjective secondary measures and also categorizing patients
20:59
to put the right patient in the right trial to get the maximum benefit from the intervention. And I chair this with the clinician based in Denmark.
21:07
And the US arm of this is chaired by Nancy Climax. and Ian Lipkin. So far, we've had three meetings. We have another one planned.

The colloquium mentioned in the first line appears to refer to the last IiME conference which was held at Hinxton

Avindra Nath mentions the Hinxton at the RECOVER-TLC Event Day One, as reported by Solve

For better trials on ME/CFS and Long Covid, Dr. Nath said we need to be measuring firmer outcomes. For example, we cannot continue to rely on patients’ subjective impressions (like whether an intervention lowers post-exertional malaise). Instead, we must properly define post-exertional malaise and set up a way to measure it objectively and fairly. (Such a scale, the Hinxton scale, is now being developed, he said.) We must also separately consider subgroups of patients with distinct immunological problems.

 

[ME/CFS Skeptic]

we're trying to develop what's called an outcome index value or measure
20:33
which has been used extensively in rheumatoid arthritis clinical trials

This sounds like what @Jonathan Edwards has been saying. Are you involved in this?

 

[Kitty]

Instead, we must properly define post-exertional malaise and set up a way to measure it objectively and fairly.

Good luck with that, chaps!

 

[MeSci]

Nancy Climax!

Presumably they mean Nancy Klimas.

 

[MSEsperanza]

This sounds like what @Jonathan Edwards has been saying

See this post and discussion on a members only thread.

Previous thoughts on the matter posted here on fully public thread.

Links to more forum discussions in the same public thread starting here.


Would be a pity if the constructors of the Hinxton scale didn't find it useful to consult with forum members...

Is there any hope that they will reach out and either engage here on the forum or suggest an exchange by other means?

 

[Ravn]

Thanks for collecting all those links @MSEsperanza, having all the relevant discussion gathered in one spot is helpful. The Hinxton people may choose to not engage here but they could still be sneak-reading and be learning something from that. Engagement in some form would be preferable though, doesn't have to be in a public thread if that's felt to be unsuitable, there are more private options (yes, that's an invitation if you are one of the Hinxton authors reading here)