Wednesday, August 17, 2016

Medical studies in children go unpublished!!! Here we go AGAIN!!!

Back in 2013 I wrote this post from a study that noted:  Almost 50% of results of cancer drug trials NOT unpublished!

What the tub?????????  And now this report notes that 19% of studies involving our most fragile population, CHILDREN, are not completed and 30% of those that are, go unpublished!!!

In this report recently on NPR Medical studies involving children often go unpublished reporter Richard Harris notes:

Many medical studies involving children never end up being put to use because scientists frequently don't publish the results of their work, according to an analysis published online Thursday.
The findings raise both scientific and ethical issues regarding research on this vulnerable population.
Previous studies have documented that about a third of all clinical trials conducted in the United States end up as largely wasted effort, because the scientists doing that work don't take the effort to publish and share their results with the scientific community.

[In the study by Bougeois and Pica, Pediatricians at Harvard and Boston Children's Hospital published in the journal] Pediatrics, the experience with childhood research is just about as bad.
The report, reviewing clinical trials started in 2008-10, finds that 19 percent of the studies that recruited children didn't run to completion. That was often because researchers weren't able to recruit as many volunteers as they needed to run the experiments. And of the 455 trials that were completed, the results from 30 percent weren't published.

"That means all the participants who are enrolled in these studies aren't able to contribute in a meaningful way to our clinical information and knowledge," Bourgeois said. One reason may be that scientists didn't get the results they were hoping for. It's less rewarding to publish results that report a failed trial, but Bourgeois says it's just as important for science to do so.

"The harm is we end up with scientific literature that only shows all the things that do work," she said. "It may falsely appear that certain interventions do work. So our literature may become biased and may not be representative of the true efficacy or safety of an intervention."  One result of that is that other scientists may try to run the same failed experiment, and end up down the same blind alley as scientists who had tried it before. "That leads to a lot of inefficiency and waste," she said.  Parents volunteer their children for these studies with an understanding that their efforts are contributing to the advancement of medical science.

The shortcomings of pediatric research come as no surprise to Dr. Joseph Ross [Yale School of Public Health]. He arrived at similar results when he analyzed clinical trials that include adults. Scientists have many explanations for why they don't publish their results. "Maybe the results don't show what the investigator wants and they move on," Ross said. "But more often people are busy and people don't focus enough time and attention on getting those results out."  Ross considers this an ethical lapse. "When you do a clinical study and you're asking patients to participate and subject themselves to a risk, in order to inform science and generate knowledge, you have an ethical obligation to disseminate those results to the wider scientific community," he said.

While clinical trials are necessary and can save lives, there are many, many problems that need to be fixed and publication of data is certainly one!!!  Here's my oped (as it were) from earlier this year:  The Problem with Clinical Trials

However, I am holding out hope.  I recently noted:  Most excellent news! Biden threatens to cut funding if cancer trials conceal results!!!  Let's go, Joe!!!!!!!!!!!!! - c

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