Studies

ROMERT The Essential Otter

Duke Center for Human Genetics
The Center for Human Genetics (CHG) at Duke University Medical Center has actively recruited families for genetic studies in ET since 2000. Currently, we are not enrolling new families. However, the study is still active and once we are ready to resume recruitment of new study participants, we will post a notice on the TAN website. If you have any questions, please feel free to contact:

Jeffrey Stajich, PA-C

Physician Assistant

Phone: 919.684.0622

E-Mail: [email protected]

Columbia University ET Genetics Study
This tremor study will be looking for a genetic component that may contribute to essential tremor. Participants with 1st degree relatives have the most genes in common. If for example, you have a sibling with tremor who also has a child with tremor, the three of you as 1st degree relatives would be eligible for the study.

If you would like more information, please send an email to the Columbia University researchers at: [email protected]. Please include your email address, telephone numbers and mailing address. You and your 1st degree relatives may live anywhere in the United States. Researchers would travel to you.

NIH Clinical Center Research Studies

12-N-0024

Recruiting patients to test different doses of oral Octonaic Acid to treat essential tremor. Researchers are testing for the dose of octonaic acid that is most useful in suppressing ET.

10-N-0199
Recruiting patients for alcohol and TMS study. Researchers are searching for to what extent alcohol supresses tremor, and what areas of the brain respond to relief from drinking alcohol.

MR-guided Focused Ultrasound Study
This study is the “first in the world” clinical trial for the treatment of essential tremor (ET), involving a noninvasive deep brain therapy that could become the alternative to stereotactic thalamotomy or deep brain stimulation. Many ET patients forego invasive surgical procedures, opting to live with progressive symptoms that are hard to treat or unmanageable with medications.

Jeffrey Elias, UVA neurosurgeon and a leading authority on the treatment of movement disorders, is the principal investigator of the FDA-approved protocol. View Dr. Elias’ video that explains the components of the MR-guided focused ultrasound technology.

Read the first patient’s testimonial. View the first patient’s video that demonstrates Billy R. Williams pre and post treatments. According to Mr. Williams, “Now everything has worked out fine for me.”

A second pilot study is scheduled at the Sunnybrook Health Sciences Centre in Toronto, under a Health Canada-approved protocol. Focused Ultrasound Surgery Foundation is funding the study.

Visit the FUS Foundation for more information.

For further patient inquiries, please contact UVA Study Coordinator Johanna Loomba at (434) 924-5859 or email [email protected].

New York Institute of Technology Essential Tremor Study
Predisposing genetic factors remain unknown for the vast majority of individuals with Essential Tremor. A team at the New York Institute of Technology has developed a novel genetic testing platform for uncovering genetic variants responsible for ET predisposition.

We are currently recruiting individuals with ET who are willing to complete a brief questionnaire and provide a cheek swab or saliva sample for entry into this research study. No on-site visit is required. If you have any interest in contributing to this research or any questions regarding this study please contact the principal investigator, Dr. David Tegay, at (516) 686-3897 or by e-mail at: [email protected].

UC San Diego Brain Observatory
The Brain Observatory is very different from traditional brain banks. Unlike the process of traditional brain banks that renders the brain collection unsuitable for retrospective review or further studies, The Brain Observatory’s collection will be preserved on thousands of slides that will improve medical treatments and the lives of patients.

Observing living donors (limited to the San Diego area) with essential tremor is just one component of The Brain Observatory’s scientific study.

The Brain Observatory is actively reviewing cases of patients with other neurological disorders such as Parkinson’s Disease and Alzheimer’s. But, brain donation of healthy individuals is equally valuable as a baseline for a normal brain at different ages. It is essential to understand why healthy brains avoid neurological disease and dysfunction.

Please call (858) 822-4467 if you would like to learn more about how to support The Brain Observatory.

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