Huntington Disease (cont.)
How can I help?
In order to conduct HD research, investigators require
samples of tissue or blood from families with HD. Access to individuals with HD
and their families may be difficult however, because families with HD are often
scattered across the country or around the world. A research project may need
individuals of a particular age or gender or from a certain geographic area.
Some scientists need only statistical data while others may require a sample of
blood, urine, or skin from family members. All of these factors complicate the
task of finding volunteers. The following NINDS-supported efforts bring together
families with HD, voluntary health agencies, and scientists in an effort to
advance science and speed a cure.
The NINDS-sponsored HD Research Roster at the Indiana
University Medical Center in Indianapolis, which was discussed earlier, makes
research possible by matching scientists with patient and family volunteers. The
first DNA bank was established through the roster. Although the gene has already
been located, DNA from individuals who have HD is still of great interest to
investigators. Of continuing interest are twins, unaffected individuals who have
affected offspring, and individuals with two defective HD genes, one from each parent-a very rare occurrence. Participation in the roster and in specific research projects is voluntary and confidential. For more information about the roster and DNA bank, contact:
Indiana University Medical Center
Department of Medical and Molecular Genetics
Medical Research and Library Building
975 W. Walnut Street
Indianapolis, IN 46202-5251
(317) 274-5744 (call collect)
The NINDS supports two national brain specimen banks. These banks supply research scientists around the world with nervous system tissue from patients with neurological and psychiatric disorders. They need tissue from patients with HD so that scientists can study and understand the disorder. Those who may be interested in donating should write to:
Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073
310-268-3536
24-hour pager: 310-636-5199
Email: RMNbbank@ucla.edu
http://www.loni.ucla.edu/~nnrsb/NNRSB
Francine M. Benes, M.D., Ph.D., Director
Harvard Brain Tissue Resource Center
McLean Hospital
115 Mill Street
Belmont, Massachusetts 02478
800-BRAIN-BANK (800-272-4622)
(617) 855-2400
www.brainbank.mclean.org
Next: What is the role of voluntary organizations? »
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