Watch for Clinical Trial Opportunities in Your Area
The IETF is pleased to start the new year with some exciting news in the area of essential tremor (ET) research. Several of our pharmaceutical partners are investigating new treatments for ET (two are detailed in stories in this issue of Tremor Gram). As part of that work, the companies are planning clinical trials to determine the safety and effectiveness of these treatments.
We are working closely with them to connect them with potential candidates to participate in their studies, so research can move forward. Watch your email and home mail for communication about clinical trials that may be taking place in your area.
Some studies pay for time and travel and all have lists of criteria for eligible participants.
A New Medication for ET Could Be on the Forefront
Our latest “Talking Essential Tremor” podcast focuses on a new drug that could change the lives of patients with essential tremor (ET).
Jazz Pharmaceuticals is investigating a drug that acts to modulate the activity of t-type calcium channels associated with ET. IETF Executive Director Patrick McCartney interviewed Jazz staff Michelle Baladi, senior director of global development, and Margaret Lee, head of neuroscience pharmacology, to learn about the investigational process and the work of Jazz.
Tune into “Talking with Jazz Pharmaceuticals About an Investigational Drug for ET” to learn more.
Our Talking Essential Tremor podcast library includes 16 recordings focusing on assistive devices, ET research, personal stories of hope and much more. Listen in at your leisure and watch for new ones each month.
Urge Congress to Support a Neuroscience Center of Excellence
Leaders of the Congressional Neuroscience Caucus and the Brain Injury Task Force are circulating a sign-on letter to the Energy & Commerce Committee in support of the creation of a Neuroscience Center of Excellence (NCOE) at the Food and Drug Administration (FDA). A Neuroscience Center of Excellence would help the more than 10 million people living with essential tremor by creating a more transparent and patient-focused process at the FDA to speed the delivery of safe and effective treatments to patients.
The Cures 2.0 Act, recently introduced by Congresswoman Diana DeGette and Congressman Fred Upton, includes language that would pave the way for the creation of a NCOE at the FDA. This language complements the Bringing Regulatory Advances Into Neuroscience (BRAIN) Act, advanced by Congressman Earl Blumenauer, Congressman Bill Pascrell, and Congressman Don Bacon, which would direct FDA to create a NCOE.
Congress needs to hear from you now. Please urge your member of Congress to support the creation of a Neuroscience Center of Excellence by co-sponsoring the BRAIN Act and signing the letter in support of the creation of a Neuroscience Center of Excellence today.
Exploring New Therapies for Essential Tremor
An estimated 70 percent of people with essential tremor (ET) are undiagnosed, misdiagnosed or untreated. And nearly half of those prescribed with medication, stop taking it due to side effects or because it’s not helping them.
Praxis Precision Medicines is working to develop a new medication specifically focused on treating ET. In our latest ET Virtual Education Event, Gabi Belfort, M.D., Ph.D., vice president, clinical development sciences at Praxis, talks about their new investigational medication PRAX-944. Clinical trials are planned for the U.S. and Canada to study its safety and effectiveness.
Watch “Exploring New Therapies for Essential Tremor” to learn more about this new research and how you can get involved.