Initial SCALED unofficial report regarding online pacer study: count of the patients

There are 246 cases where whether the patient deployed the pacer is unreported, 185 cases where the pacer was reported deployed. Since the number of patients who deployed the pacer is substantially less than the number of patients who did not, a scaled column is added, increasing the difference found by 133% (thereby making the cohorts comparable: 185 * 133% ~ 246). The current status shows pacer users leading the others at the median, three, five and eight years . . . at the ten year threshold they are about the same. At the Texas (eleven and one half years) threshold nonusers appear to have a slight lead and at twenty years a strong lead, however, most pacer users have not had enough time to reach twenty years, further, at least four patients of these long term survivors would not have been eligible for the pacer because they have long been long term survivors rather than fresh cases. Hence, the pacer is currently emerging as leader in all temporal categories (subtract four patients from each scaled difference).


Unofficial Pacer Study Summary: Scaled - Google Drive
Unofficial Pacer Study Summary: Scaled - Google Drive

"Not Reached (>33)" and "Not Reached (>133)" months ought to read "Not Reached (>33)" and "Not Reached (>33)" months in Table 2 for the Sham cohort of the RespiStimALS paper:

Early diaphragm pacing in patients with amyotrophic lateral sclerosis (RespiStimALS): a randomised controlled triple-blind trial
Early diaphragm pacing in patients with amyotrophic lateral sclerosis (RespiStimALS): a randomised controlled triple-blind trial - PubMed

in e-mail apparently from RespiStimALS's lead laparoscopic neurosurgeon.

These summary sheets are from my web observations of pulmonary pacing interested patients over the last about twenty-five years.

This brief summary was 'completed' when the number of pacing patients nearly equaled the number of patients undisclosed (and probably not pacing):
Unofficial Pacer Summary: LTSumAlpha - Google Drive

These summaries are nearly complete for patients involved at the time DiPALS and RespiStimALS published pacing reports:

One of these sets of 'summaries' shows four fewer patients because they likely were ineligible because they passed their opportunity window before the pacer intervention was developed:

All inclusive:
Unofficial Pacer Study Summary: SCALED Pro+ - Google Drive

Four omitted:
Unofficial Pacer Study Summary: SCALED Pro- - Google Drive

Preliminary Surface View
TruGrit: DiPALS & RespiStimALS - Google Drive

This chart abstracts the losses during the DiPALS and RespiStimALS clinical trials.

The losing cohort in each temporal period is denoted in red; note the DiPALS control cohort is the only cohort with two losses; the DiPALS treatment cohort lost only once, . . . both of RespiStimALS cohorts are surgical cohorts but they incurred no loss temporal periods. In fact the RespiStimALS early stim cohort clearly outperformed the DiPALS NiV cohort (56 to 49 moons) and the sham RespiStimALS cohort might have if their effort was not curtailed by the possible problem DiPALS encountered.

Definitely a poor choice of emotocon if that is the one I picked, sorry. I am trying to show the data shows fewer deaths were occurring per time period in almost all of the time periods of the study when compared to the NiV cohort; with only one major exception . . . raises the possibility of statistical anomaly or even sabotage (remember, these studies are typically blinded but the DiPALS was open label (not blinded).
pacing patients in

Interventional procedure overview of intramuscular diaphragm stimulation for ventilator-dependent chronic respiratory failure caused by motor neurone disease

https://www.nice.org.uk/guidance/ipg...ments/overview

UK NICE = National Institute for health and Care Excellence

Note the expression on the cover page:

" . . .It should not be regarded as a definitive assessment of the procedure . . . "
🍦🍦🍦🍨🍦🍦🍦

One would EXPECT weaker results when fewer patients of a clinical trial cohort undergo an efficacious intervention, especially when those who did not undergo the intervention are included in the tabulations. Such weaker results would tend to corroborate rather than refute the efficacy claim, however stronger results may not. DiPALS did not accumulate sufficient information to form an independent opinion on the merits of the intervention's value and thus can not responsibly argue the intervention has general value because they do not have enough data for making the case. They wanted to consider the possibility certain subgroups might benefit from the intervention but could only advocate future research strive for improving the differentiation of candidate cases.

An important issue here is saving a distressed clinical study when the syndrome under consideration is highly variant in its effect on patients and getting partial value out of the developed results.