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November 02, 2003
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)
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 Greater Los Angeles Health Care System, 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:
Dr. Wallace W. Tourtellotte, Director
National Neurological Research Specimen Bank
Greater Los Angeles Health Care System
11301 Wilshire Boulevard
Los Angeles, California 90073
(310) 268-3536
Dr. Edward D. Bird, Director
Brain Tissue Bank, Mailman Research Center
McLean Hospital
115 Mill Street
Belmont, Massachusetts 02178
800-BRAIN-BANK (800-272-4622)
(617) 855-2400
Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.
All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.
Reviewed July 1, 2001
Posted by Dave at November 2, 2003 10:51 AM
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