Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
I want to pass this along to all of you, it is so exciting----amazing studies being done !! When I went to my first physical therapy session the PT told me about a new procedure that he had just read about. This is for the treatment of tremors and does not involve invasive surgery like DBS does. It is using ultrasound and targets the same area as DBS. It is currently being studied at the University of Virginia Healthcare Center (UVA) and awaiting approval for further clinical testing.
So I went home and looked up what he told me on the Web. I emailed the editor of the first article and he told me to contact a different person for details at the UVA. So I did that and below is what he emailed back to me.
Sorry this is really long but worth reading --- VERY exciting news !
Dr. Elias and the Neurosurgery Department of UVA sincerely thank you for your interest in our functional neurosurgery Focused Ultrasound clinical trials. This procedure is still in the early stage of research, so is not available as a standard therapy. Patients may only receive this treatment as part of a clinical trial. There are no other sites right now in the United States doing these clinical trials. As of today, we are awaiting approval for our next trials in essential tremor and tremor-dominant Parkinsons disease. We expect that it will be a few more months before we are enrolling patients in these trials.
You can find more information about UVAs development and use of Focused Ultrasound technology at this website: http://uvahealth.com/services/neurosciences/conditions-and-treatments/focused-ultrasound.
Please review our responses to the most frequently asked questions, as well as a number of links to additional resources and websites.
I am a patient with essential tremor, Parkinsons, or other movement disorder. How can I be considered for a UVA clinical trial involving Focused Ultrasound?
As trials open, we work through our database of interested patients to identify potential candidates. You can enter yourself into this database through this website: https://www.healthsystem.virginia.edu/focusedultrasoundtrial . Please have your basic medical information (including diagnosis and medications) available when you enter the database. Also, please be aware that we are at an early phase of our research and can only treat a small number of patients as part of these trials. We hope that in the near future larger trials will be conducted involving more sites, and that ultimately, the device will be approved for these and other neurosurgical applications.
As a tremor patient, what other options are available to me?
Please see our website for functional neurosurgery options available at UVA (http://uvahealth.com/services/neurosciences/conditions-and-treatments/functional-neurosurgery/). Also, the International Essential Tremor Foundation (http://www.essentialtremor.org/) is an excellent resource for patients with this condition.
How can I find out which focused ultrasound clinical trials are currently open in the United States, and where the trials are being conducted?
Clinical trials that are open to recruitment are listed by the NIH, and can be found at http://www.clinicaltrials.gov/. Use the search field and enter focused ultrasound as well as the indication you are interested in.
Where can I find out more about Focused Ultrasound Surgery?
The Focused Ultrasound Surgery Foundation (http://www.fusfoundation.org) is an excellent educational and informational resource. Private donations to the Foundation have provided the financial support for our research to date. Their webpage that is specific to essential tremor treatment is here: http://www.fusfoundation.org/Essential-Tremor/essential-tremor. Insightec is our regulatory sponsor and the manufacturer of the device we use. Visit their website for more information about this technology: http://www.insightec.com.
How can I receive updates about Focused Ultrasound Surgery?
You can subscribe to a newsletter that is sent out monthly by the Focused Ultrasound Surgery Foundation at this link: http://www.fusfoundation.org/Newsletter-Subscribe/newsletter-signup.
Sincerely,
Charles McMillian
Neurosurgery Clinical Trials Office
University of Virginia Health System
So I went home and looked up what he told me on the Web. I emailed the editor of the first article and he told me to contact a different person for details at the UVA. So I did that and below is what he emailed back to me.
Sorry this is really long but worth reading --- VERY exciting news !
Dr. Elias and the Neurosurgery Department of UVA sincerely thank you for your interest in our functional neurosurgery Focused Ultrasound clinical trials. This procedure is still in the early stage of research, so is not available as a standard therapy. Patients may only receive this treatment as part of a clinical trial. There are no other sites right now in the United States doing these clinical trials. As of today, we are awaiting approval for our next trials in essential tremor and tremor-dominant Parkinsons disease. We expect that it will be a few more months before we are enrolling patients in these trials.
You can find more information about UVAs development and use of Focused Ultrasound technology at this website: http://uvahealth.com/services/neurosciences/conditions-and-treatments/focused-ultrasound.
Please review our responses to the most frequently asked questions, as well as a number of links to additional resources and websites.
I am a patient with essential tremor, Parkinsons, or other movement disorder. How can I be considered for a UVA clinical trial involving Focused Ultrasound?
As trials open, we work through our database of interested patients to identify potential candidates. You can enter yourself into this database through this website: https://www.healthsystem.virginia.edu/focusedultrasoundtrial . Please have your basic medical information (including diagnosis and medications) available when you enter the database. Also, please be aware that we are at an early phase of our research and can only treat a small number of patients as part of these trials. We hope that in the near future larger trials will be conducted involving more sites, and that ultimately, the device will be approved for these and other neurosurgical applications.
As a tremor patient, what other options are available to me?
Please see our website for functional neurosurgery options available at UVA (http://uvahealth.com/services/neurosciences/conditions-and-treatments/functional-neurosurgery/). Also, the International Essential Tremor Foundation (http://www.essentialtremor.org/) is an excellent resource for patients with this condition.
How can I find out which focused ultrasound clinical trials are currently open in the United States, and where the trials are being conducted?
Clinical trials that are open to recruitment are listed by the NIH, and can be found at http://www.clinicaltrials.gov/. Use the search field and enter focused ultrasound as well as the indication you are interested in.
Where can I find out more about Focused Ultrasound Surgery?
The Focused Ultrasound Surgery Foundation (http://www.fusfoundation.org) is an excellent educational and informational resource. Private donations to the Foundation have provided the financial support for our research to date. Their webpage that is specific to essential tremor treatment is here: http://www.fusfoundation.org/Essential-Tremor/essential-tremor. Insightec is our regulatory sponsor and the manufacturer of the device we use. Visit their website for more information about this technology: http://www.insightec.com.
How can I receive updates about Focused Ultrasound Surgery?
You can subscribe to a newsletter that is sent out monthly by the Focused Ultrasound Surgery Foundation at this link: http://www.fusfoundation.org/Newsletter-Subscribe/newsletter-signup.
Sincerely,
Charles McMillian
Neurosurgery Clinical Trials Office
University of Virginia Health System
http://uvahealth.com/services/neurosciences/conditions-and-treatments/focused-ultrasound.
Be sure to then page down to read about "tremors".
But while we are sharing websites, take a look at this article: http://www.dibs.duke.edu/news/research-findings/2009/03/24/spinal-cord-stimulation-as-potential-parkinson-s-disease-treatment-/ It describes one of the research projects that Miguel Nicolelis has spun off from his other amazing work in neuroscience at Duke Univ.
This particular piece is very interesting, but is not yet ready for prime time.
Beekeeper
The site below goes directlly to the one I was trying to share. Sorry about the confusion. That was the email the U of VA sent me.
http://uvahealth.com/services/neurosciences/conditions-and-treatments/focused-ultrasound.
Anyway---when you go into that site then click on "forused ultrasound".