I suspect some of the 'missing topics' are addressed in the questions that weren't presented to me as a patient. Had I identified as a researcher...
I filled it in as an individual 'international' respondent. In answer to question two I stated that Australian guidelines matter to me as a New...
Must have missed this paper earlier It's a survey so has all the usual issues inherent in surveys but it's a large one so the absolute figures...
Could a registry be a vehicle for collecting reports of harm following specific interventions? I'm not sure it's particularly helpful at this...
One problem with a registry looking at natural disease course is continuity of funding. Well, it's a problem for any sort of registry but even...
These would be useful things to study. Recruitment bias would preclude quantitative interpretations but it would still deepen our understanding of...
I've just learned about this preliminary study getting underway in NZ: Determining a minimum dataset for a proposed ME/CFS Registry It would be...
Thank you for livening up this thread, Jonathan, you must have a few more followers than me ;) The bolded bit is precisely where I keep getting...
A comprehensive plain language resource covering the very many things that need to be thought through when considering establishing a registry...
A discussion in a private group raised the question of how to deal with comorbidities in a registry. Summarising: Reasons for capturing common...
Otago Medical School is looking for lived-experience volunteers - patients and carers - to help train the next generation of doctors. If patients...
I dimly recall us discussing the suitability of FUNCAP for measuring PEM. IIRC the general feeling was it was not finegrained enough to capture...
See this thread https://www.s4me.info/threads/assessing-current-pem-severity-whether-one-is-in-a-crash.42400/
Well, maybe your auto-correct has grasped something of the essence of the thing: PEM is an extortionate price to pay for indulging in some minimal...
Good on Claudia for engaging and thinking about this I'm not aware of any validated standardised instrument, or any really, for this. So an open...
extortionate gremlins at work?
/...continued/ An finally: What other important questions could a (low-budget) registry answer? And which question should be the main priority?...
/...continued/ We have a general idea already, there's much more seeking (and needing) than getting going on. Selection bias would likely skew...
/...continued/ Not by itself a question to build a registry on but could be interesting in conjunction with the stratifying question above and it...
/...continued/ This could be a useful question. Not so much for the mod/severe issue, we already stratify by severity, and the bit we don't know...
Separate names with a comma.
