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 Medical Advisory Board Member on TED

Dr. W. Jeffrey Elias photo

Dr. W. Jeffrey Elias

TED, a nonprofit devoted to “Ideas Worth Spreading”, brings the world’s most captivating speakers to the masses through short, prepared talks covering today’s cutting edge technology, entertainment, and design topics. The TED conference recently visited Charlottesville, VA, where IETF Medical Advisory Board member, Dr. W. Jeffrey Elias, discussed his work on the Focused Ultrasound research study for essential tremor.

As Director of Stereotactic and Functional Neurosurgery at the University of Virginia,Dr. Elias has led a number of research investigations. In 2011, his team became the first in the world to successfully treat a person with disabling [essential] tremor using focused ultrasound that was guided by magnetic resonance imaging (MRI). This procedure and subsequent clinical trials have resulted in an outpouring around the globe of investigations using ultrasound interventions to treat disorders of the brain. ¹

In his presentation, Dr. Elias shared his study results along with a message of the importance of research to further scientific advances.

Watch the taped presentation. Dr. Elias is the second to the last speaker (click on the timeline at approximately 08:30.00 to get right to his section).

¹[Unattributed] TEDx, http://www.ted.com/tedx/events/8358. Nov.15, 2013.

DARPA Focuses on DBS

DBS

Deep brain stimulation (DBS) is a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.

The Defense Advanced Research Projects Agency (DARPA) is the agency of the United States Department of Defense responsible for the development of new, advanced technologies in order to maintain the technological superiority of the U.S. military. DARPA recently announced that it will commit $70 million over the next five years to the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative. More specifically, to further investigate Deep Brain Stimulation (DBS).

Deep brain stimulation (DBS) surgery is an FDA-approved treatment that has been proven to significantly reduce the tremor associated with ET. In DBS surgery, a wire (electrode or lead) is placed in the ventral intermediate nucleus (VIM) nucleus of the thalamus, located deep in the brain. The wire connects under the skin to a pacemaker-like device in the chest, which provides mild electrical currents to control symptoms. In ET, DBS of the VIM nucleus of the thalamus is the most commonly used surgical procedure to control tremor.

Advances in technology have now opened up this option for other complex conditions such as depression, which is precisely why DARPA is so interested in the technology.  According to the U.S. Department of Veterans Affairs, 10% to 18% of Operation Enduring Freedom/Operation Iraqi Freedom (OEF/OIF) troops are likely to have PTSD after they return from service.  That is a significant number of men and women who may require treatment.

So what does this initiative mean for those affected by essential tremor? DARPA would like to see DBS go further than just treat symptoms. “There is no technology that can acquire signals that can tell them precisely what is going on with the brain,” says Justin Sanchez, DARPA program manager, to The New York Times. He explained that DARPA is “trying to change the game on how we approach these problems.”

DARPA hopes to develop DBS to the point that the device will be able to monitor brain signals in real time, treat illness accordingly and measure the success of that treatment. This would be a real games changer for ET patients suffering from severe tremor symptoms. Imagine never having to turn the DBS device on or off, or have it calibrated. It would be programed to know exactly how to manage individual tremor symptoms, then evaluate the results and make adjustments accordingly.

Only time will tell if DARPA is successful with this ambitious project. But even if all their goals are not realized, they are bound to discover an abundance of new information about how the brain works.

Learn more about BRAIN.

Head Snap – Promising New Finding

finger test

Scientists recently released a study that could be a useful aid in diagnosing essential tremor.

Researchers at Columbia University found 20% of essential tremor patients in the study exhibited a head snap, which is a jerking motion of the head while engaging in the finger-nose-finger maneuver. In this maneuver, people touch their nose with their finger and then try to touch the examiner’s finger in an alternating fashion to test for tremor.

The study also documented the prevalence of head snap to Parkinson’s disease patients, and they found that none of these patients exhibited head snap.

Because so many ET patients are misdiagnosed (approximately 30-50%), many as having Parkinson’s, researchers hope attention to head snap will lead to more accurate diagnosis of essential tremor.

Read more here.

 

August DC Report

 

Washington_DC_-_US_Capitol

Congress adjourned for its summer recess on August 5 and will return on September 9.  As in months past, congressional attention has largely been directed toward repeal, or at least major modification, of the Affordable Care Act. Therefore, it difficult to address other issues right now.

However, the IETF and Tom continue to speak to congressional representatives two or three times a month on research and other issues pertaining to the IETF and essential tremor.  We will continue to follow the programs and plans that result from the call for action on brain research by President Obama.

President Obama launched the BRAIN Initiative in April. The initiative is a research effort to revolutionize our understanding of the human mind and uncover new ways to treat, prevent and cure brain disorders. The Initiative promises to accelerate the invention of new technologies that will help researchers produce real-time pictures of complex neural circuits and visualize the rapid-fire interactions of cells that occur at the speed of thought.

Find more information on the BRAIN Initiative on the IETF’s website.

Hopefully, more will be done after the congress resumes in September.

Find past IETF DC reports here.

July DC Report

In July, Tom Bruderle, IETF Legislative Liaison, and Catherine Rice, IETF Executive Director participated in the July 22 NIH BRAIN Initiative Webinar designed to engage the patient advocacy community in the research pursuant to President Obama’s commitment earlier this year. There were about 100 people on the call with a second event anticipated sometime in the fall. Currently, NIH is developing specific scientific goals for the Initiative and has a website up and running at http://www.nih.gov/science/brain/index.htm where you can follow the progress.

Not much has occurred this month in the House and Senate. Tom continues to increase awareness and educate our congressional representatives about essential tremor. If you have a congressional representative or senator in DC that you would like for Tom to visit, please send us an email at info@essentialtremor.org.

 

Learn more about the Brain Initiative

Follow the progress and learn more about Brain Research through Advancing Innovative Neurotechnologies – the BRAIN Initiative – at www.nih.gov/science/brain/index.htm. This is an extremely important project because it accelerates our understanding of how the brain works. This in turn will help advance research that develops new interventions for conditions and diseases – like ET! The new tools and technologies that will be developed will lift all research to new levels and provide breakthroughs in the future that enable the development of better treatments and cures to be found.

New study searches for more precise diagnostic tool

Brain ChangesIt is sometimes difficult, even for a trained neurologist, to tell the difference between Parkinson’s disease and essential tremor when it is in the early stages, as they can share similar symptoms (such as resting tremor). A new Taiwan-based study investigated changes in brain volume in people with essential tremor and Parkinson’s disease, searching for a pattern that might help differentiate between to the two conditions more easily.

The study found that although both ET and PD patients showed a decrease in brain volume in areas involved with movement and muscle control, it also showed increases in other distinct areas. Researchers speculate that this is due to the ability of the brain to compensate for damaged areas by developing and strengthening new pathways, thus increasing the size of those areas.

Although further study is needed, it appears that looking specifically at the areas of the brain that increase in volume, along with other diagnostic and assessment tools, may allow physicians to more accurately differentiate between ET and PD.

Read the abstract.

How DBS Surgery Works – Research Indicates Possible Answer

Neurologist Dr. Harrison Walker says his team may have found the possible answer to how deep brain stimulation (DBS) works.

Deep brain stimulation, used for 15 years for essential tremor patients and 10 years for Parkinson’s disease patients, can stop uncontrollable shaking in patients with certain neurological diseases. Previously, no one knew how it worked.

Read more on our ?Essential Tremor in the News? webpage.

September 2012 ET Report From Washington DC

Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation, files his monthly reports about his efforts to increase ET awareness and support for ET-related legislation in Congress.

In his September report, he writes, “Through the efforts of the IETF, the number of cosponsors of the National Neurological Diseases Surveillance System Act of 2011 (HR 2595) has climbed to 87, up from 84 last month.”

This bipartisan bill would require federal agencies funding neurological studies to share their findings. Sharing these findings would further research among neurology studies of different conditions including ET.

To read Bruderlie’s full report for September 2012 and prior months, visit http://www.essentialtremor.org/ET-report-from-washington-dc.

For full language of the legislation, visit http://thomas.loc.gov/cgi-bin/query/z?c112:H.R.2595.IH: