Important note: Information in this article was accurate in 2002. The state of the art may have changed since the publication date.
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AIDS TREATMENT NEWS Issue #385, November 22, 2002
John S. James
In both cases the patient must give consent in advance. For example, when a patient consents to surgery that may result in tissue that would be discarded, the doctor can ask about interest in donating it for medical research.
NIAID (the U. S. National Institute of Allergy and Infectious Diseases, which does most of the AIDS research at the National Institutes of Health) asked the National Disease Research Interchange (NDRI) to collect the tissue needed. NDRI, a nonprofit organization headquartered in Philadelphia, has contracts with physicians and hospitals throughout the country to obtain and properly preserve the tissue and make sure that it reaches qualified researchers. NDRI has been providing tissue for cancer and other disease research for over 20 years and has now started an HIV program. NDRI is not a tissue bank (although it has freezers and can prepare and store tissue in special circumstances); instead, it facilitates arrangements for the tissue to reach the researcher in a timely fashion and in proper condition for the study.
Not everyone's tissue can be used; each research project has its own requirements. Inclusion of a person's tissue often depends on his or her medical condition. For example, at this time (November 2002) researchers most need tissue from persons who were on HAART and asymptomatic, but died in an accident or other cause unrelated to HIV. Research requirements change with the different projects and cannot be predicted in advance. But NDRI would like to hear from anyone who is HIV positive and willing to donate -- either after surgery, or in case of death -- and can answer questions about current needs and research projects.
Persons volunteering to donate in case of death are strongly urged to explain their wishes to their families. Even if a potential donor has consented, his or her family can refuse and overrule their decision.
U.S. residents with HIV who might consider tissue donation, or HIV physicians, can contact NDRI at 800-222-6374 extension 237 for more information. Or check http://www.ndri.com for information about NDRI.
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