IETF Funded Research 2004
Essential tremor (ET), one of the most common neurological diseases, is also among the least-studied and most poorly-understood neurological disorders. As a result, few therapies exist that are effective in many patients.
A major question needs to be addressed in order to lay the foundation for the development of better therapeutic strategies. What is the pathological basis for ET (i.e., what types of structural/cellular abnormalities does one see in the brain of someone with ET)? Despite the fact that the disease is so common, few brains have been studied and most have not been studied in detail. Also, these brains have never been compared with the brains of people who did not have tremor (i.e., a “control” group).
With a $70,000 IETF grant, we have recently established the Essential Tremor Centralized Brain Repository at Columbia University. With this major step, we plan to study a systematic fashion the brain changes that occur in patients with ET. In addition to conventional methods, we will use other state-of-the-art scientific methods (immuno-histochemistry and stereology) to study the brain abnormalities in ET.
However, no matter how refined or pathological methods are, equally important is that we know that the brains that we receive are from people with pure ET. If people have other diseases, like Parkinson’s or dystonia, then we will be unable to effectively interpret our studies, leaving us with murky results that will not be useful to anyone. Many people with ET have mild signs of these diseases but do not know it unless a neurologist who specializes in movement disorders examines them.
The best way to make sure that we are dealing with brains from people with pure ET is to have these people examined by a neurologist who specializes in movement disorders, but there are few of these doctors in the country and they generally are only available at tertiary care centers in cities.
The brains we will be receiving are from IETF members who live throughout the country, many in rural areas. So, the next best thing to being examined by a movement disorder specialist is for the person with ET to send us a videotape of their examination.
Because many people do not have access to videotape equipment, they will need to travel to their local videotaping center to rent a video camera. This will cost them, on average, approximately $65 each. We would like to defray the costs for these people by offering them $65. This will ensure that we collect the necessary clinical information that we need to complete our study.
Since the National Institutes of Health (NIH) budget did not include the money to cover this cost, we are asking for the help of the IETF. We expect that we will need to obtain 400 videotapes in the upcoming two years. At a cost of $65 each, this will cost $26,000.
Elan D. Louis, MD, MSc
Lead researcher, ET Brain Repository and Associate Professor of Neurology, Columbia University, NYC
Learn more about the ET Centralized Brain Respository and how you can become a brain tissue donor.