Tune into Our Latest Virtual Education Event
The IETF has added another virtual education event to its online library.
“The Global Burden of Essential Tremor and the Economic Cost of Treatment” focuses on the economic costs of care and treatment for people living with essential tremor.
One study showed that Medicare beneficiaries aged 65 and older with ET spent roughly $1,068 more per year on medical care than similar individuals without the condition. Scaled to the Medicare population, that adds up to somewhere between $1.5 billion and $5.4 billion annually — just for older adults.
The information is presented by Dr. Kandice Kapinos, senior economist and professor of public policy, RAND School of Public Policy. For the past several years, she has worked Dr. Elan Louis, at UT Southwestern Medical Center, analyzing insurance claims data from hundreds of thousands of Americans to build a clearer picture of the economic burden of ET. The findings suggest that the costs to the health system are substantial.
Download Our ET Coping Tips Handout
Essential tremor can turn daily tasks into a test of ingenuity, perseverance and self-esteem. Dressing, eating, applying makeup, brushing your teeth – all of these things can lead to frustration and anxiety, and also increased tremor.
The IETF has compiled a list of everyday coping tips, many of which have been shared by those in the ET community. It includes general suggestions as well as suggestions for writing, eating/drinking, food preparation, using technology, airport security and more.
You can download it free from our website.
Your Legacy Means Hope
No one likes to think about their own mortality. That’s why most people put off making a plan for their estate and assets until much later in life. But making arrangements in advance can bring a sense of comfort when you realize your family and the causes you have held close to your heart will continue to be supported when you are gone. An estate plan makes your intentions clear and helps you make an impact into perpetuity.
Through the years, the IETF has worked with dozens of individuals who have included bequests and others gifts in their estate planning. A gift to the IETF supports us as we continue our advocacy and support for those with essential tremor. Your special gift could bring us closer to a cure, changing the lives of the millions of people in the future.
Learn more online.
Research Study Recruitment
PILOT Study of Essential Tremor
Dr. Elan Louis and his team of tremor researchers at UTSW Medical Center are conducting a new PILOT study of Essential Tremor (ET). They need help from the ET community. If you are at least 80 years old and have been diagnosed with essential tremor in the last 2 to 5 years, then please contact the UTSW researchers at the following email address: tremor@utsouthwestern.edu.
We are conducting a feasibility study during which we plan to contact you once and ask over the phone 10 questions, including age, gender, medication history, treatment received for ET, and location of tremor symptoms. After completing the screening, we will ask you if you would be interested in a future study.
Please include your contact information in your message, including your name, telephone and the time zone or state.
Study of AGN-151607-DP to Assess Adverse Events and Change in Disease Activity in Adult Participants with Upper Limb Essential Tremor
At Inland Northwest Research (INWR), we are enrolling adults with upper limb essential tremor (ET) for a Phase 2b clinical trial evaluating an investigational treatment called gemibotulinumtoxinA (AGN-151607-DP). The study will evaluate whether this investigational drug is safe and effective in reducing tremor. Approximately 94 participants will be enrolled at about 40 sites across the United States and Canada. Participants with INWR must be able to come to Spokane, Washington for appointments.
Participants will receive injections of either the investigational treatment or a placebo and will complete questionnaires and clinical assessments over approximately 72 weeks. Following the blinded portion of the study, participants will have the opportunity to receive the investigational treatment during an open-label period.
Study Details:
Title: A Phase 2b Multicenter, Randomized, Double-Blind, Placebo-Controlled Study With an Open-Label Period to Evaluate the Efficacy and Safety of AGN-151607-DP (USAN: gemibotulinumtoxinA) for the Treatment of Upper Limb Essential Tremor in Adults
ID: M25-850
Estimated Enrollment: 94 participants
Start: June 2026
Estimated Study Completion: November 2028
Please note: Some study site information on ClinicalTrials.gov may not yet be up to date. If you are interested in participating, please contact us directly at contacts@inwresearch.com, visit our website at inwresearch.com, or contact the AbbVie Clinical Trials Call Center for the most current information on participating sites.
Syn-T: Analysis of Cutaneous Phosphorylated alpha-Synuclein to Identify Patients at Risk of Progressing from Essential Tremor to Parkinson’s Disease
Dr. Christopher Gibbons and his team at CND Life Sciences are conducting a new research study to identify Essential Tremor (ET) patients who may be at risk of developing Parkinson’s disease. If you are between 50-85 years old and have been diagnosed with essential tremor or essential tremor-plus, you may be eligible to participate.
This two-year observational study involves skin biopsies to detect phosphorylated α-synuclein, a biomarker that may indicate early Parkinson’s disease. Participants will undergo comprehensive neurological assessments and follow-up evaluations. Compensation of $250 per completed visit is provided.
The study is being conducted at select movement disorder and clinical research centers across the United States. Enrollment is available through participating sites only — patients must be seen at a study site to be eligible.
To find out if there is a participating site near you, please visit ClinicalTrials.gov and search for “Syn-T” or “essential tremor alpha-synuclein.” You may also email the study team at ClinicalResearch@CNDLifeSciences.com with your name, telephone number, age, and diagnosis information, and they will help connect you with a site in your area, if there is one close by.
Talk to me about the cost of treatment when we get away from Silo “medicine “. That is financial black hole that you’re referring to. Functional medicine recognizes that 30-60% of the population have malabsorption issues. If this is addressed. There will be a lot more healthy people and money saved. Unfortunately this would also hurt a lot of revenue for certain people and companies. We’re looking at a vicious cycle. Where this influential and pompous influencers would rather cull the herd. Rather than fix the problem altruistically.
What are the specific sources of medical costs. Are they injuries with treatment costs? Insurance ddoes not pay for my double tapping each letter on my keyboard or the embarassment of trying to sign a credit card bill or spilling my drinks. If there are hundreds of thousands of us, why are there only three active research sites where most of us are too far away to reach? It seems that our population would be large enough to encourage development of some effective treatments.
You can see a more comprehensive story about the global burden of ET in a virtual education event we recorded. The slides used in this presentation have sources noted in many cases. https://essentialtremor.org/the-global-burden-of-essential-tremor-and-economic-cost-of-treatment/
As for the research trials recruiting participants, we have many more posted on our website. We usually share a few in each issue of Tremor Gram. Here is the link to that site: https://essentialtremor.org/what-we-do/research/research-recruitment/