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 curetogether.com and contribute to the collective good. 

Best wishes for the holidays.

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*  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.

Curetogether Adds Stuttering

I suggested that the Curetogether organization might add stuttering to its list of health conditions.  The response from Daniel Reda, one of the co-founders of Curetogether, is as follows:

We've just added Stuttering to CureTogether. Please feel free to add symptoms or treatments that are not already listed. The survey is here -
                        http://curetogether.com/stuttering/survey/symptoms/


The survey allows you to enter data regarding symptoms, treatments, side effects, and causes.

This is an opportunity to collect some data on stuttering all in one place rather than having anecdotal information scattered throughout the blogosphere.  Please partake in this project and express your experiences with various treatments, either positive or negative.  If enough data is collected, various statistical analyses can be conducted to shed some light on this fluency condition.

Citizen Involvement in Stuttering Research?

With the dashing of hopes that pagoclone might eventually be released to the market, the slow pace of medical research for palliatives/cures for stuttering, and the reluctance of researchers and pharmaceutical companies to release data, we propose an alternative path.  This path is suggested by an article in the Wall Street Journal (December 3, 2011) entitled “Citizen Scientists.” 

As the article headline claims, “ordinary people are taking control of their health data, making their DNA public and running their own experiments”.  An organization called Genetic Alliance is part of a growing movement that empowers patients to control and analyze their health data in order to advance medical knowledge.  The on-line posting of personal medical information and its public availability is the key to such initiatives.

The citizen scientists involved in these efforts may use the internet to run experiments and clinical trials as well as perform their own analyses.  The experiments generally test drugs, approaches or devices that are already available as opposed to some new, for example, drug.  And the results of some of these experiments are being published by medical journals.

An on-line site dedicated to patient-driven research concerning the efficacy of treatments for a variety of health conditions (close to 600 at this date) is Curetogether.com.  This website collects data from individuals through survey instruments regarding their symptoms, treatments, side-effects, and causes. 

The results are tabulated and presented in graphical form.  Participating individuals may add further observations through a  “Post Your Comment” discussion section.  In addition, the data are presented in cross-tabulation form with effectiveness along the y- axis and popularity (extent of use) along the x-axis.

The Curetogether organization encourages partnerships with research organizations, universities, and self-experimenters.   It collaborates on and sponsors a number of research studies using the collected data.

Unfortunately, among the health conditions covered, stuttering is not included.  Clearly, its inclusion would be of benefit to those individuals who are disfluent in terms of identifying treatments that may be of use as well as avoiding those that are ineffective and perhaps costly.  The data might also provide insights that could improve the understanding of stuttering and lead to future advances.

Critics may claim that data gathered through citizen involvement might not be collected in a rigorous fashion, that conclusions may be drawn from sample sizes too small to yield statistically valid results, or that self-selectivity biases may undermine the conclusions.  While in some cases this may be true, the data collected and the resulting studies nevertheless are useful in pointing the way to future research efforts either by citizen scientists or professionals. 

Breaking News About Pagoclone

I have received the following comment from Dr. Gerald Maguire, UC Irvine School of Medicine, who has been involved in the pagoclone trials:

Thank you for your informative blog. I would like your readers to know that Endo Pharmaceuticals has decided to focus on their core business of urology and pain management and will not continue the pagoclone stuttering research program. Our university will be starting our next pharmaceutical trial of asenapine in stuttering in the coming weeks. We are fortunate that Merck has funded this important double-blind trial in stuttering. The mechanism of asenapine, being a dopamine-antagonist, is more clearly defined in stuttering than the partial dopamine agonist of pagoclone. Keep up the great work with your blog! 


We will be looking forward to the publication of the results from the pagoclone stage 2 trials by Dr. Maguire et al.