ET research

New therapy enters Phase II testing

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Sage Therapeutics is about to begin Phase II testing of Sage-324 for Essential Tremor. There is a lot to learn about the way Sage is thinking about Neurological Disorders on their corporate website at:

Experts Review Surgical Treatments for Essential Tremor

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We are fortunate that ET experts recently reviewed surgical treatments for ET to write this paper entitled Surgical Treatments for Essential Tremor. They include DBS (deep brain stimulation), FUS (focused ultrasound surgery/ablation), SRS (stereotactic radiosurgery), and radiofrequency ablation treatment. The authors detail when surgical treatment is an option (when tremor symptoms are severe) plus they cover complications and outcomes, including limited effectiveness and possible need for repeat or additional surgery. Details are also included for those with voice and head tremor. Patients may have tremors bilaterally, that is on both sides of their body, however certain surgeries are found to have better outcomes if the procedure is done unilaterally, meaning the outcome affects only one side and is therefore a partial solution.

For a better understanding of what is happening in the brain of someone with ET, read the paper’s introduction. It explains how the tremor signals travel along a communication loop in the brain known as the corticobulbocerebellothalamocortical loop. It also tells how the surgeries for ET target the ventralis intermedius (Vim) or the posterior subthalamic area (PSA) right below the Vim, and surgical stimulation in these spots disrupts the signals in the loop, lessening tremor.  If we can locate a visual image of this loop we will post it! The authors’ key issues, conclusions and expert commentary are worth reading especially for those interested in surgical options with supporting data. Overall, the authors, Elble, Shih and Cozzens comment on the rapid improvements being made in surgical treatments.

This paper was supported in part by a grant from the Illinois-Eastern Iowa District Kiwanis Neuroscience Foundation.

Surgical treatments for essential tremor

Quality Of Life Research

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While anecdotally we may know the quality of our daily lives are affected by our Essential Tremor, what does the clinical research show? Here are links to a few past study articles on just that:

Quality of Life in Essential Tremor Questionnaire (QUEST): Development and initial validation

The psychosocial burden of essential tremor in an outpatient- and a community-based cohort.

The authors of the first study above indicate their goal of developing sound, reliable measures of quality of life for ET patients. Yay!

Both articles have results of study questionnaires where participants self- reported on their symptoms. In the first study participants reported on the negative physical impact of their tremor, the psychological impact, and tremors’ impact on communications, work/finance, and hobbies/leisure. Factors used in the second study were depression, personality traits, psychiatric components, coping strategies and a quality of life health survey.

It is commendable in the first study that the data are specific to the body location of ET symptoms, meaning that voice, head, arm and leg tremor results are included, not just hand tremor.  As would be expected of those with voice tremor, the data show the severe impact their condition has on communications. And in the second article, the study authors make note of interesting results that show significant, negative psychosocial impact of ET that is not closely associated with or dependent on the severity of the tremor. This means that even if physical tremor symptoms are not considered severe, they can still have a hefty, negative psychosocial impact.

Overall it appears self-reported questionnaires are developing into something meaningful. The clinical researchers or study authors are hopefully connecting some dots, having learned about the physical, social and neuropsychological components of this condition, and knowing more clearly now how everyday life is impacted for the ET population. Click on the links for more information about the individual studies (but be forewarned it is not easy reading).

UMBC Accessibility Research Study

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We received the following information from the University of Maryland, Baltimore County’s Human-Centered Computing program about their need for participants for a short survey plus an interview:

In this project, we are designing and evaluating adaptive systems to support the use of the computer mouse and other pointing devices when navigating the Web. We are looking for 15-25 individuals who are 65 years or older and who are experiencing permanent or intermittent pointing problems due to hand tremors, arthritis, or other conditions that impact fine motor hand movement. The participants will be interviewed about their computer use. They will also use a computer system that we are developing called PINATA and provide feedback about their experience.

To learn more about the study, view the attached flyer.
To learn more about PINATA, click here.