NIH Clinical Research Trials and You
Researcher Story: Stuttering
In a 2010 movie, The King’s Speech, many learned for the first time about King George VI of England’s speech challenge known as stuttering and about the King’s work with a speech therapist to overcome this communication disorder heard in speeches such as this one he delivered in Wembley Stadium. Stuttering is a speech disorder in which sounds, syllables, or words are repeated or prolonged, disrupting the normal flow of speech. For people who stutter, disruptions may be accompanied by struggling behaviors, such as rapid eye blinks or tremors of the lips. Stuttering can make it difficult to communicate with other people, which often affects a person’s quality of life.
Dennis Drayna, Ph.D., an intramural researcher at the National Institute on Deafness and Other Communication Disorders at the NIH, is studying stuttering with the participation of research volunteers.
If you stutter or have a family member who stutters, you could be eligible to participate in Dr. Drayna’s clinical research trial. Participation involves providing a small blood sample and a recorded speech sample. For more information about this clinical trial, see Protocol NCT00001604 on ClinicalTrials.gov, or contact the NIH Clinical Center Patient Recruitment and Public Liaison Office, (800) 411-1222, firstname.lastname@example.org.
The King’s Speech: George VI
. . .(hesitation) let the plans that are being prepared (hesitation) at a time (hesitation) when (hesitation) when (hesitation) this country (hesitation) was still under the cloud of a long industrial depression . . .
What was the impact of The King’s Speech?
In some ways the most important aspect of humans as a group is their ability to communicate, and if you destroy that ability you destroy one of the most important things about us. I think it revealed not only the seriousness of the disorder but also how with work and understanding people can actually do things to mitigate the effects of the disorder.
How Do Researchers Study Stuttering?
A large portion of the family clustering of stuttering is explained by genes and not by environment. So, the question is, can we use this information, the fact that it is genetic, to actually understand the underlying causes of stuttering? So, the good news is-we can. The genetic methods for all sorts of medical genetic disorders have been refined over the past decade and half and have given us the power to identify the genes that underlie really any clearly inherited disorder. The problem with stuttering is that it is not very clearly inherited. So, while genes are involved, this disorder does not follow simple rules of inheritance in families. It in fact has a kind of murky inheritance pattern. And that is what has caused many of the difficulties in being able to identify the locations of these causative genes.
How Can I Get Involved?
Virtually all the people who we recruit now are individuals who stutter, who have stuttered for a long time, and who have a family history of the disorder. — CROSS FADE — The foundation of our studies is the human subjects who volunteer to participate. Without human subjects, human geneticists really can’t make progress. How do we find our subjects? Well, we find them through a variety of ways. We work closely with stuttering organizations. For example, each year I go to the annual convention of the National Stuttering Association where I give a talk about our research, and I recruit and I enroll research subjects right there. Likewise, we’ve worked with the British Stammering Association and their annual meeting in England. We’ve worked with families around the world who have been recruited through speech-language-pathology programs in universities and speech clinics in places like England, Brazil and other places. And then, finally, we also work with speech therapy organizations in the United States that have provided a steady flow of subjects for our research. So what’s involved? Its pretty simple really. We need a small blood sample from each participant and a recorded speech sample. So, really, there are some logistics involved in getting those, but that’s really all that we require, and the goal is to enroll as many people as possible, because genetics works better with bigger numbers.
- Who Is Affected by Stuttering?
- Are Boys and Girls Affected Differently?
- What About Nature vs. Nuture and the Genetics of Stuttering?
- What Helped Your Current Research?