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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.
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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)
Brain tissue is also critical to the HD research effort, and many
individuals are willing to donate their brains and other organs
to research after they die. The NINDS supports two national human
brain specimen banks, one at the Wadsworth Veterans Administration
Medical Center in Los Angeles, and the other at McLean Hospital
near Boston. These banks supply investigators around the world with
tissue not only from individuals with HD but also from those with
other neurological or psychiatric diseases. Both banks need brain
tissue to enable scientists to study these disorders more intensely.
Prospective donors should contact:
Wallace W. Tourtellotte, M.D., Ph.D.
Director, National Neurological Research Specimen Bank
VA Wadsworth Medical Center Neurology Research
Wilshire & Sawtelle Boulevards
Los Angeles, CA 90073
(310) 268-3536 (call collect)
Francine M. Benes, M.D., Ph.D.
Director, Harvard Brain Tissue Resource Center
Mailman Research Center, McLean Hospital
115 Mill Street
Belmont, MA 02178
(617) 855-2400 (call collect)
(800) 272-4622
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