Wednesday, December 21, 2011

Reasons to Participate in the Curetogether Survey

If your concern is solely about yourself and what drug or treatment you could partake in that would enhance your fluency, then perhaps you would not find much utility in taking  the Curetogether survey.  However, I would think that the typical reader of this blog is an individual of curious mind who might be interested in learning what is behind his/her fluency problem. Hopefully, then, your curiosity is such that you will find useful information derived from the collection of large scale data on a variety of stuttering treatments. 

There is virtually no knowledge from large scale studies (i.e., involving a large number of participants) simultaneously evaluating the impact on stuttering across pharmaceuticals, fluency devices, and various speech therapy approaches.  And many of the individual studies on specific treatments tend to be self-serving.   This is your chance to contribute to one such large scale study.  We expect that many Curetogether survey participants likely would have experienced more than one treatment.

The anonymous data that is collected will be available to all.  There will be no pharmaceutical company intervention to limit data dissemination in order to protect its proprietary interests.  Nor will there be ONLY the availability of aggregated data as is typical of most academic research studies.  Data sets at the micro-level will be available to anyone desiring to conduct analyses. 

The survey instrument is organic in the sense that it grows as survey participants add items onto the lists of the four survey areas: symptoms, treatments, side effects, and causes.  The instrument is by no means perfect since it is a “one size fits all” approach for a large number of medical conditions.  The scales used may not be the optimal ones specifically for the collection of data on stuttering.   In addition the survey instrument may not get at the combined effect of multiple therapies applied at the same time (e.g., pharmaceutical with speech therapy). 

Nevertheless, useful information can be derived from such a large scale data collection.  For example, we will get a better picture of what effect pagoclone has had on participants in the drug trials from the participant’s point of view*. 

We can also get an estimate of the percentages of individuals in at least two main subgroups (dopamine excessive vs. dopamine deficient) potentially based on survey results involving dopaminergic enhancing drugs (amphetamines) vs. dopaminergic diminishing drugs (atypical antipsychotics, BZs, pagoclone)**.

So please participate in the Curetogether survey at and contribute to the collective good. 

Best wishes for the holidays.

*  I recognize that some may regard the self-reporting of individuals to be unreliable or any sort of effectiveness perceived by an individual to be the result of a placebo effect.  At least one popular pharmacophobic blog devoted to stuttering appears to be overeager to discount an individual’s view and to attribute any positive self-reporting results to the placebo effect.

**  Third and fourth subgroups may involve those responsive to both dopaminergic enhancing and diminishing drugs on one hand, and those responsive to neither on the other hand.  Such findings would be interesting in their own right.

1 comment:

Focus Groups said...

Request you all to give your honest and true opinion in the survey.