New, exciting changes for DBS patients

Activa PC+SResearchers at the University of Washington are developing a new device to help monitor and record tremor changes in Deep Brain Stimulation (DBS) patients. With the new Activa PC+S device, developed by Medtronic, stimulation can be turned on and off, leading to battery conservation of the device — an issue for current DBS technology. A person with essential tremor could detect their tremor and adjust the stimulation within clinician set limits.

The Medtronic Activa PC+S sits in the chest with electrodes, electrical conductors that make contact with a nonmetallic part of the circuit, wired into the brain. The electrode doesn’t have to be used to stimulate but since it is present, it can still be used to record tremor to later analyze for adjustments, if needed.

Researchers are also developing an Android smartwatch app to communicate with the piece of hardware from smartphones and smartwatches. When the patient senses the tremor, they can enable stimulation and modify within parameters in real time without a computer or without visiting their physician.

This device is not yet FDA-approved and still in early research stages. For more information visit, The Daily.

NIH joins together five brain banks

The NIH announced the formation of a new brain and tissue repository network, NeuroBioBank, in order to create better access to post-mortem samples for those researchers studying brain disorders. Brain banks accept brain and tissue donations from people affect by brain diseases and from non-affected individuals, searching for changes that may offer insight into the cause of disorders such as essential tremor, depression, multiple sclerosis and autism.

Until now, brain banks were funded in a piece-meal sort of fashion; individual researchers requested funds for a specific disease or their specific bank. With this project, the NIH is looking to consolidate its funding efforts into a larger, more effective, standardized repository.

In September of 2013, contracts totaling $4.7 million were awarded to five brain bank repositories:  Mt. Sinai School of Medicine, New York City; Harvard University in Cambridge, MA; University of Miami; Sepulveda Research Corp., Los Angeles; and the University of Pittsburgh.  These banks have already begun developing a web-based sharing system that will allow the whole of the neuroscience community access to brain tissue samples and data, with a simple click of a mouse.

“Instead of having to seek out brain tissue needed for study from scattered repositories,   researchers will have one-stop access to the specimens they need,” explained Thomas Insel, MD, director of NIH’s National Institute of Mental Health.

Other brain banks, such as those funded by the IETF for the study of essential tremor, may become eligible to become contract sites of the NeuroBioBank in the future. In the meantime, the five current NeuroBioBank sites will soon be uploading their specimen inventories and clinical data (early 2014) so that researchers from around the globe can identify available specimens and further our understanding of the inner workings of brain and brain disorders.

For more information about the participating brain banks visit www.neurobiobank.nih.gov. You can also learn more about IETF funded brain banks in the IETF Funded Research section of our website.

IETF Ambassador Makes the News

Joe Bremhorst, an IETF Ambassador, was featured in a recent news story to give his review of the Liftware spoon, a tremor-cancelling spoon from Lift Labs.

“It’s dampening my tremor tremendously,” Joe says in the story. He calls the Liftware spoon amazing and a lifesaver.

The IETF is glad to hear of Joe’s remarkable success he’s had with the Liftware spoon, and we hope many people with essential tremor will find the device as life-changing as Joe does. Liftware may be pre-ordered now, and Lift Labs will begin shipping the spoons in December.

Read more about this and other essential tremor stories in the news here.

Phase III of Focused Ultrasound Trial Begins

 

Dr. W. Jeffrey Elias photo

Dr. Jeffrey Elias and the ExAblate

The first patient has been treated as part of a Phase III trial evaluating the success and safety of treatment using the ExAblate Neuro on essential tremor patients. The study builds on promising pilot studies demonstrating the preliminary safety and effectiveness of MR guided focused ultrasound technology. Read about Phase I of the trial here.

The results of this trial are expected to support a submission of the ExAblate Neuro to the FDA for Pre-Market Approval.

InSightec, makers of the ExAblate Neuro, will be partnering with BIRD (US-Israel Binational Industry R&D) and the Focused Ultrasound Foundation for this trial.

Find information on registering for this and other essential tremor studies at clinicaltrials.gov.

Lift Pulse 2.0

Lift Labs AppLift Pulse 2.0, a smart phone app created by Lift Labs, has released the results of data gathered from users since updating the app in June 2013. Lift Pulse 2.0 includes a journal feature that measures and records tremors. It also records what medications you’re taking for tremor and how you’re doing with sleep, exercise and stress. The app stores your journal entries anonymously in Lift Lab’s private database. You have access to this data through your phone and computer, and Lift Lab analyzes it to provide you with information on how different factors affect your tremor.

Among the data extracted from users of Lift Pulse 2.0, Lift Labs found:

  • The most commonly used prescription is Propranolol (Inderal®), followed by Primidone (Mysoline®).
  • Exercise exacerbates amplitude of tremor.
  • People who reported less stress have less severe tremor symptoms.

Lift Pulse 2.0 users have measured their tremor almost 4,000 times so far, and that number continues to grow, according to Lift Labs.

Lift Labs, an IETF partner, focuses on healthcare and consumer devices used by individuals with motion disorders such as Essential Tremor. Lift Pulse 2.0 is available from iTunes and Google Play.