IETF Funded Research 2007
IETF awards $20,000 on Worldwide Conference to Identify ET Research Goals
Extracted from the Executive Summary prepared by Rodger J. Elble, MD
ET is not a lethal condition. Because of this, few grant requests have been submitted to the National Institute of Health for research into ET. Among numerous deficiencies in ET knowledge is that no consistent set of characteristics has been defined for this disorder, and no ET gene has been identified. A better understanding of this condition and better treatment options are needed.
In addressing this crisis in research, the IETF, along with The National Institute of Neurological Disorders and Stroke, the United States Army Medical Research and Material Command and four other organizations, funded the 2005 “Consensus Conference on Essential Tremor.” Held in Washington, DC, October 21 – 22, 2005, researchers attending the conference identified six objectives as being most important for future research in ET.
- Creating a collaborative network of research centers sharing research data, findings and ideas.
- Forming an international committee to standardize assessment criteria for ET, and creating tremor scales that are suitable for research studies as well as routine office assessments. These scales would acknowledge the severity of impact on motor function, activities of daily living and quality of life concerns.
- Identifying one or more genes for ET, which is the primary piece of the puzzle in understanding the abnormalities in brain function caused by ET, and in finding a cure.
- Creating a centralized repository of reproducing human cell lines containing DNA from families with well-defined ET.
- Creating a centralized repository of brain cell samples from well-defined ET patients after death.
- Developing animal models of ET so that pharmaceutical companies can screen for promising drugs.
In addition, a further recommendation was made to utilize the skills of a movement disorder neurologist in research studies to diagnose persons with ET and to identify persons without ET to use as controls. The diagnostic definition of ET was set as being the same as recommended at the International Tremor Conference in Kiel, Germany in 1997.
According to the Kiel criteria, definite ET is abnormal action tremor of one or both arms, or isolated head tremor with no abnormal head positioning, dystonia or other neurologic signs. Conference participants did recognize that some researchers believe that isolated head tremor is only “possibly” ET, but for the purpose of standardizing research criteria, isolated head tremor, without the above noted conditions, will be classified as ET.
A problem for genetic research in ET was acknowledged in that no reliable method of distinguishing mild ET from enhanced physiologic tremor exists. Due to the limited value of electrophysiologic tests, many individuals with mild ET will remain undiagnosed, creating inaccurate prevalence estimates.
Additional areas suggested for future research include: Healthcare costs produced by ET, the natural history of ET and environmental risk factors and their interaction with genetic factors.
The conference was attended by more than 70 researchers representing academic neurology departments from throughout the United States, and from the National Institute of Health. Dr. Leslie Findley represented The National Tremor Foundation of London, UK.