Research Studies
Posted on August 3, 2020

Queensland Brain Institute at The University of Queensland, Australia, offers the public the opportunity to become involved in research through volunteering for clinical trials. Several are ongoing and are listed on their website.

Research Studies
Posted on July 14, 2020

Dr. Elan Louis and his colleagues at UT Southwestern Medical Center are conducting a groundbreaking, national research initiative in the study of essential tremor.

This research is being conducted in an entirely REMOTE and VIRTUAL format, which ensures the health and safety of our study subjects while also maintaining pioneering research operations. Study activities can be completed using ONLINE platforms such as Zoom or Skype, or simply by telephone. You will have the opportunity to contribute to meaningful ET research from the comfort and safety of your own home.

The study of cognition in essential tremor (COGNET) is the first of its kind to track cognitive changes of an exclusive cohort of individuals with ET. We are excited to announce that COGNET has received funding to extend its innovative work. So far, 230 individuals have participated in this unique longitudinal study; we are now calling on the ET community to help us expand our selective cohort to 295 individuals. We hope that you will help us complete this pioneering, NIH-funded research in essential tremor!

Interested candidates must meet the following criteria:

  1. You have been diagnosed by a doctor as having ET (rather than dystonia or Parkinson’s Disease, for example).
  2. You are at least 80 years old.
  3. You did NOT have brain surgery for the treatment of ET (e.g. DBS, FUS).
  4. *You are willing to have three interviews with us at your home (now, 18 months, 36 months).  Each interview will consist of questions about your tremor, various questionnaires and puzzles, and a videotaped neurological exam. The first interview will also include a blood draw (1 tube). Researchers will travel to meet with qualified participants; visits will take place over two days, with a 2.5-hour interview scheduled for each day. 
  5. You are willing to become a brain donor in the future. We would discuss this further with you.

If you are interested, please send an email to: cognet@utsouthwestern.edu or call 214-648-9888, 214-648-3431, or 203-554-7854.

*Virtual interviews are being conducted during COVID-19.

Research Studies
Posted on July 14, 2020

Dr. Elan Louis, chair of the Department of Neurology and Neurotherapeutics and his colleagues at UT Southwestern Medical Center are conducting a groundbreaking, local research initiative in the study of essential tremor. Risk factors underlying essential tremor (RULET) is a research study that tracks the environmental causes associated with movement disorders such as Essential Tremor (ET) and Parkinson’s disease (PD). This NIH funded study is excited to begin recruitment in the Dallas-Fort Worth area. We hope that you will help us complete this unique research.

Interested candidate should meet the following criteria:

  1. You are at least 50 years old.
  2. You live near UTSW (maximum of 3hrs away by car)
  3. You have been diagnosed with Essential Tremor
  4. You do not have a medical history of Parkinson’s disease (PD) or Dystonia

If you decide to enroll, you will take part in a phone screening and an in-person interview that lasts approximately three hours. A research assistant will travel to your home at no cost to you. The interview includes a blood draw, a neurological videotaped evaluation and the completion of several questionnaires.  You will be compensated for your time ($40)

If you are interested or have any questions, please call 214-648-9884, 214-648-3485, 214-645-6239 or e-mail us at: rulet@utsouthwestern.edu

Research Studies
Posted on July 14, 2020

Dr. Elan Louis, chair of the Department of Neurology and Neurotherapeutics, and his colleagues at UT Southwestern Medical Center are conducting a groundbreaking, local research initiative in the study of essential tremor. Risk factors underlying essential tremor (RULET) is a research study that tracks the environmental causes associated with movement disorders such as Essential Tremor (ET) and Parkinson’s disease (PD). This NIH funded study is excited to begin recruitment in the Dallas-Fort Worth area. We hope that you will help us complete this unique research.

Interested candidate should meet the following criteria:

  1. You are at least 50 years old.
  2. You live near UTSW (maximum of 3hrs away by car)
  3. You have been diagnosed with Essential Tremor
  4. You have a medical history Parkinson’s disease (PD)

If you decide to enroll, you will take part in a phone screening and an in-person interview that lasts approximately three hours. A research assistant will travel to your home at no cost to you. The interview includes a blood draw, a neurological videotaped evaluation and the completion of several questionnaires.  You will be compensated for your time (40$)

If you are interested or have any questions, please call 214-648-9884, 214-648-3485, 214-645-6239 or e-mail us at: rulet@utsouthwestern.edu

Research Studies
Posted on July 6, 2020

Study Description:

The KINETIC Trial is a clinical research study evaluating the safety and effectiveness of an investigational drug in individuals diagnosed with essential tremor. Researchers are evaluating if the investigational drug is effective in reducing tremors.

The study comprises three periods: screening, treatment, and follow-up. Participation in the study will last approximately 71 days and will consist of seven study visits.

Study Details:

Phase: 2
Type: Double-blind, placebo-controlled
Interventions: investigational drug, placebo
Gender: Male, female
Minimum age: 18 years
Maximum age: 80 years
Enrollment goal: Approximately 60 patients
Compensation range: Speak with study site for more details
Participation length: Approximately 71 days

Study Purpose:

The overall goal of the study is to evaluate the safety and effectiveness of the investigational drug in adults with essential tremor.

Eligibility Criteria:

Key inclusion criteria:*

  • You should discuss with your prescribing physician before discontinuing any medications you are currently taking
    • Medications taken for the treatment of essential tremor that were discontinued prior to receiving the investigational medication may be resumed following Day 29 of the study

Key exclusion criteria:*

  • Participant has had an injury to the nervous system that occurred within three months before the tremors began
  • Participant has had a previous procedure for the treatment of essential tremor
  • Participant has historical or clinical evidence of tremor that occurs because of psychological or psychiatric causes, including but not limited to eating disorder or major depressive disorder
  • Participant has had exposure to another investigational drug or device within 30 days prior to the Day 1 visit
  • Female participant has a positive pregnancy test or a confirmed pregnancy at time of study
  • Participant is unwilling or unable to follow the study instructions

*There are additional eligibility requirements which the study doctor can explain to you.

To learn more or prescreen for the KINETIC Trial please visit KineticETtrial.com.

MRC-324-00143
IETF Trial Listing_324-ETD-201_06032020_V1.0
© 2020 Sage Therapeutics, Inc. All rights reserved. KINETIC Trial is a trademark of Sage Therapeutics, Inc.
Research Studies

Yale University – New Haven, Connecticut

What causes essential tremor is currently a question with no known answer. Brain donations (also called postmortem examination or autopsy) are the only way to find the answers to this question. With these answers, better treatments can be developed and a cure can be found.

Medical researchers at Yale University, with the help of the IETF, maintain a centralized brain bank to serve the ET community. This will enable doctors to begin to actively study what happens in the brains of people with ET. Unfortunately, there is a severe shortage of brain tissue donations from people who had ET during life.

Eligible donors will have been diagnosed with essential tremor by a physician, they would not have any other neurological diagnoses (eg. Dystonia, torticollis, Parkinson’s disease), would be ages 70 and older, and had not had Deep Brain Stimulation surgery or any other surgical intervention to treat their tremor.

If you are interested in helping find the causes of ET and want to leave a medical legacy for future generations, please call 203.785.5301 or email tremor@yale.edu, and you will be sent an information packet on brain donation. Or for more information, visit www.essentialtremor.us.

Brain Donor Project

The Brain Donor Project is a non-profit that supports the brain banks of the National Institutes of Health (NIH), the NeuroBioBank, to increase the supply of donated brain tissue for scientific research. There is no cost to the family to donate a brain to a NeuroBioBank site, nor to receive a copy of the donor’s neuropathology report if requested. No age restrictions and very few limitations on eligibility are in place, but it is highly recommended to register in advance. Learn more.

The Brain Observatory – San Diego, California

The Brain Observatory’s brain bank in San Diego, California is now accepting brain donations from patients who have been diagnosed with Essential Tremor (ET). The effort is part of the institute’s Digital Brain Library project, a web-accessible digital archive of neurological data that will be open to worldwide collaboration. Potential brain donors may also participate in active ET research. By combining modern neuroimaging techniques and detailed behavioral testing with the eventual examination of the brain, researchers aim at obtaining a new and more comprehensive picture of ET.

Note: The program is currently enrolling only residents of San Diego county; however, potential participants from other areas will be signed into a registry that may be the basis for future larger studies.

Please contact Mrs. Ruth Klaming for more information about brain donation or research participation. For more details on the Digital Brain Library, visit their website.

Research Studies

Mount Sinai School of Medicine is conducting an essential tremor research trail. This study is only open to those living in the New York City area. This research trial will study persons who:

  • have essential tremor
  • have troublesome hand tremor
  • have tremor in both hands
  • do not have liver insufficiency

The purpose of this research study is to find out whether perampanel, a medication marketed for the treatment of seizures, reduces hand tremor in persons with essential tremor. Participants will have tremor observed and video-taped and answer questionnaires so that investigators can find out whether perampanel reduces tremor. During the study, perampanel is taken for 14 weeks, and a placebo for 14 weeks. Total participation will last up to 40 weeks. There are a total of 6 visits, and participants will be compensated for each visit.

To learn more about “A Double-Blind, Cross-Over, Placebo-Controlled Efficacy and Tolerability Study of Perampanel for Essential Tremor” contact the Principal Investigator:

Mindy Lopez
The Robert and John M. Benheim Parkinson’s and Movement Disorders Center
New York, NY
212-241-9038
mindy.lopez1@mssm.edu

Winona Tse, MD
Department of Neurology
Icahn School of Medicine at Mount Sinai
5 East 98th St., New York
212-241-5607
winona.tse@mssm.edu

Joan Bratton
212-241-0279 or joan.bratton@mssm.edu

Research Studies

The essential tremor research team at Columbia University, headed by Dr. Sheng-Han Kuo, is looking for people in the New York City area with essential tremor, to study their brain activity using an electroencephalogram (EEG).

EEG is a routine clinical procedure to study brain activity and could be used to study essential tremor. One of the most important questions for essential tremor is: from which region of the brain does the tremor originate? To try and answer this question, researchers will place EEG leads on the scalp of study participants, to study their brain activity. Researchers will study activity across the whole brain with the hope of identifying the source of the abnormal brain activity that causes tremor. This study aims to help researchers better understand the area of the brain responsible for essential tremor, which will, in turn, help researchers find more effective ways to treat it.

Study Details

  • EEG is a non-invasive procedure.
  • You will need to travel to Columbia University Medical Center for this study, but reimbursement will be provided for travel expenses.
  • The study will last for approximately 2 hours.
  • There is no blood draw involved.

Inclusion Criteria
In this study, researchers are looking for people who have had a diagnosis of essential tremor for more than 3 years.

Contact Information
If you are interested in this study or have questions, please contact Dr. Shi-Bing Wong or call 212-342-3753.

Research Studies

Researcher’s at McGill University in Montreal, Quebec, Canada are conducting the largest genetics study of essential tremor patients ever. They require 10,000 participants affected by essential tremor. This is a global study and there is no travel involved.

Inclusion Criteria:

  • This study is open to anyone who has essential tremor, even if you have not been officially diagnosed by a physician.
  • Participants must be at least 16 years old.
  • It is okay if you are currently on medication for your essential tremor.

If selected, you will be provided with several necessary documents: a consent form, a genealogy form, and a writing test. Upon completion, these documents can be returned to the researchers via email or postal mail. These documents will be examined by a specialist to determine if you qualify for the next stage of the study.

If selected, you will receive all the necessary informational materials and a prescription to have your blood drawn for testing. Packaging and shipping for sending your sample back to the researchers will also be provided.

Your help is needed if we are to understand the cause of essential tremor. If you have questions about this study, please email the researchers directly.

Research Studies

Researchers at Brigham Young University (BYU) are looking for people with essential tremor to participate in a research study. This study, headed by Steven Charles, Ph.D., is aimed at better understanding the effect of sensory stimulation on tremor.

Study Details

  • The experiment is non-invasive.
  • It consists of a single session lasting approximately 2 hours.
  • It is performed in a laboratory on the BYU campus or, alternatively, in your home or the home of an acquaintance.
  • Participants will receive $50 in compensation.

Participant Criteria

  • 18 years or older
  • Diagnosed with essential tremor by a neurologist.
  • Willing to travel to the BYU campus in Provo, Utah, or live within a 2-hour drive of Provo.

If you are interested in participating in or have questions regarding this study, please contact Joseph Bonham or call 928-243-8170.