How Can I Help Dementia Research?

People with dementia and others who wish to help research on dementing disorders may be able to do so by participating in clinical studies designed to learn more about the disorders or to test potential new therapies. Information about many such studies is available free of charge from the Federal government’s database of clinical trials, clinicaltrials.gov (http://clinicaltrials.gov).

Information about clinical trials specific to AD is available from the Alzheimer’s Disease Clinical Trials Database (www.alzheimers.org/trials), a joint project of the U. S. Food and Drug Administration and the National Institute on Aging (NIA) that is maintained by the NIA’s Alzheimer’s Disease Education and Referral Center.

For clinical trials taking place at the National Institutes of Health, additional information is available from the following office:

Patient Recruitment and Public Liaison Office
Clinical Center
National Institutes of Health
Building 61, 10 Cloister Court
Bethesda, Maryland 20892-4754
800-411-1222
TTY: 301-594-9774 (local), 866-411-1010 (toll free)
www.cc.nih.gov/ccc/prpl/

Voluntary health organizations, such as those listed in Information Resources, may be able to provide information about additional clinical studies.

Another important way that people can help dementia research is by arranging to donate their brains to brain and tissue banks after they die. Tissue from these banks is made available to qualified researchers so that they can continue their studies of how these diseases develop and how they affect the brain. Brain banks accepting donations include the following:

National Disease Research Interchange
1628 JFK Blvd.
8 Penn Cntr. 8th floor
Philadelphia,  PA  19103
Tel: 215-557-7361 800-222-NDRI (6374)
Fax: 215-557-7154
EMail: info@ndriresource.org
http://www.ndriresource.org

Human Brain and Spinal Fluid Resource Center
Neurology Research (127A) W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles,  CA  90073
Tel: 310-268-3536 Page: 310-636-5199
Fax: 310-268-4768
EMail: RMNbbank@ucla.edu
http://www.loni.ucla.edu/~nnrsb/NNRSB

UM/NPF Brain Endowment Bank
University of Miami Dept. of Neurology
1501 N.W. 9th Ave., Rm. 4013 (D 4-5)
Miami,  FL  33136
Tel: 305-243-6219 800-UM-BRAIN (862-7246)
Fax: 305-243-3649

Harvard Brain Tissue Resource Center
McLean Hospital
115 Mill Street
Belmont,  MA  02478
Tel: 800-BRAIN BANK (272-4622) 617-855-2400
Fax: 617-855-3199
EMail: btrc@mclean.harvard.org
http://www.brainbank.mclean.org

People who have more than one family member affected by AD also may be able to help research by contributing blood samples to a gene bank. A large initiative to collect such samples was announced in 2003. This large gene bank should accelerate research efforts to identify genes that play a role in AD. People interested in participating in this gene bank can learn more about it at the address and telephone numbers below:

Alzheimer’s Disease Genetics Initiative
National Cell Repository for Alzheimer’s Disease (NCRAD)
Indiana University
Indianapolis, Indiana 46202-5251
800-526-2839
317-274-7360
EMail:  alzstudy@iupui.edu
http://ncrad.iu.edu