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Duke Center for Human Genetics
The Center for Human Genetics at Duke University Medical Center is actively recruiting large families for genetic studies in ET. Whenever possible, the family should be large enough to have living individuals (both with and without essential tremor) in at least three generations, many of whom are willing to participate in research. There is no cost to participate. Participation does NOT require travel to Duke University Medical Center.
Participating families will be asked to contribute the following forms of information:
1. A telephone interview, at the family's convenience, to review the family history.
2. A review of the medical records of one person in the family who has been diagnosed with ET.
If the family history and availability of family members is appropriate, we will complete telephone interviews with eligible families. Eligible families will then be scheduled to meet with a member of our research team to obtain blood samples and videotaped, directed neurological examinations. The research team member will come to the family's home or any convenient location to do this. No individual genetic results will be given to study participants. We will share our overall findings with families through periodic newsletters and scientific publications. All the information obtained from participants is kept strictly confidential.
For additional study information, contact:
Jeffrey Stajich
Phone: (toll-free) (877) 244-9272
E-Mail: stajich@chg.duhs.duke.edu
ET Research Newsletter
The publication that shares Duke Center for Human Genetics essential tremor research team progress made in the lab, contributions at scientific meetings, and plans for the future in identifying the genes that cause ET.
CleveMedComputer Mouse Study
Joseph P. Giuffrida, PhD is recruiting 10-15 volunteers with essential tremor in or near the Cleveland area to participate in a clinical study with CleveMed's computer mouse that is designed to filter out tremor. The two criteria for participation are: the volunteer should have a moderate to severe tremor, and be proficient in using a computer mouse. For additional study information please contact Dr. Giuffrida at 216-619-5904 or send an email to: JGiuffrida@CLEVEMED.com.
Trace Touch Screen Study
The Trace Center at the University of Wisconsin-Madison is looking for individuals who have movement disorders of their arms or hands to participate in a study for evaluating usability of information technology, If you would like to help the Trace Center in making information technology devices that are more accessible, please contact Bob Meyer at 608-263-3827 or send an email to: trace@wisc.edu.
Riboflavin Study
Dr. Esther Baldinger and Long Island Hospital College in Brooklyn, New York are recruiting essential tremor patients for a follow-up double blind study to further assess the effectiveness of Riboflavin for the treatment of ET. This study will evaluate patients four times: At baseline, with no Riboflavin treatment and then every six weeks on three different doses of Riboflavin, one of which will be low and will act as the placebo phase. Neither the patient or the doctor will know the order in which the doses will be given. Patients must be able to travel to Brooklyn, New York to participate. Any person willing to participate in this study should contact Dr. Baldinger at (718) 232-1570.
Writer's cramp: therapeutics perspectives
The use of splints can bring new results for the motor recovery of writer's cramp. Flavia Quadros Boisson Waissman, RPT, and Joćo Santos Pereira, MD, conducted the State University of Rio de Janeiro Study in two phases to gain a better understanding of the therapeutics perspectives of writer's cramp - focal dystonia.
Clinical Studies of Essential Tremor at Columbia University
Investigators led by Elan D. Louis M.D. at Columbia University are enrolling people with essential tremor (ET) in clinical research studies in order to gain a better understanding of their illness. These studies are funded by a large research grant from the federal government (the National Institutes of Health). Several hundred participants have already taken part in this research, but Dr. Louis is still actively recruiting more individuals with ET, with the goal of recruiting several hundred more. "More participants lead to more information and better information about this illness, "according to Dr. Louis, who thinks that some of this information will be useful when developing better treatments for ET. Therefore, recruitment will remain open until 2009.
More specifically, Dr. Louis and colleagues are looking for individuals with ET who are age 18 or older and who live in the tri-state area of Connecticut, New Jersey, and New York. This study does not require participants to take any type of experimental drug/medication. Participants undergo a 2.5 to 3 hour one-time in-person interview. The interview can be performed either at home or at the medical center. During this time, Dr. Louis' colleagues will be asking questions about lifestyle, diet, work history, and tremor. In addition to the questions, participants will be given a complete neurological examination, which will be videotaped. Each participant will receive $50 at the end of her/his interview. An additional sum will be provided for travel compensation. Those who are interested in participating and live in the tri-state area, please contact Dr. Elan Louis, primary investigator, or Eileen Rios, project coordinator, at (212) 305-8601.
Essential Tremor Centralized Brain Repository
Essential tremor is a disease that affects the lives of as many as one in twenty Americans but its cause remains a medical mystery. Brain donation (also called postmortem examination or autopsy) is the only way to solve this mystery. Unfortunately, there is a severe shortage of essential tremor brains. Medical researchers have only been able to study a few brains from people with essential tremor because, until recently, no national brain donor program has existed. Medical researchers at Columbia University have recently taken a huge step forward. In 2003, these researchers, lead by Elan Louis M.D., established for the first time a centralized brain bank to serve the essential tremor community. This will enable doctors to begin to actively study what happens in the brains of people with essential tremor. With a brain donor program, doctors will be able to study the changes in brain structure and metabolism that may explain the cause of essential tremor. Better treatments and, eventually, a cure for essential tremor, will only come about when doctors have developed a better understanding of these brain changes. Brain donation is essential to this effort. This can only be a collaborative effort involving doctors and people with essential tremor. We need your help. If you are interested in helping us to build this brain bank, please let us know by calling us at (212) 305-8513 or emailing us at tremor@columbia.edu and we will send you an informational packet.
Utah Neurology
Dr. Kevin Flanigan is currently conducting essential tremor gene mapping studies in three very large Utah families, and a few smaller ones.
The Utah families are good candidates because of their size and detailed family records. For information regarding collaborative research studies, contact Dr. Flanigan at (801) 587-9540.
Genizon BioSciences
Dr. Jean-Michel Vidal (M.D., Ph.D.) is recruiting from the French Canadian founder population located primarily in Quebec and in some specific surrounding locations, in order to identify genes responsible for essential tremor.
Genizon has introduced the novel approach of studying family PPC Trios (patient, spouse and biological child, or patient and his/her two biological parents). The recruitment of the patient for this study is through the neurologists who collaborate with Genizon. French Canadians from Quebec who wish to participate can also call Dr. Vidal at
1 (888) 244-3088 or send an e-mail to: jean-michel.vidal@genizon.com.
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