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

 Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:

Alzheimer’s Disease Education and Referral Center (ADEAR)
National Institute on Aging
P.O. Box 8250
Silver Spring, MD   20907-8250
adear@nia.nih.gov
http://www.alzheimers.nia.nih.gov
Tel: 301-495-3311 800-438-4380
Fax: 301-495-3334
Alzheimer’s Association
225 North Michigan Avenue
Floor 17
Chicago, IL   60601-7633
info@alz.org
http://www.alz.org
Tel: 312-335-8700 1-800-272-3900 (24-hour helpline) TDD: 312-335-5886
Fax: 866.699.1246
Alzheimer’s Foundation of America
322 Eighth Avenue
7th Floor
New York, NY   10001
info@alzfdn.org
http://www.alzfdn.org
Tel: 866-AFA-8484 (232-8484)
Fax: 646-638-1546
John Douglas French Alzheimer’s Foundation
11620 Wilshire Blvd.
Suite 270
Los Angeles, CA   90025
http://www.jdfaf.org
Tel: 310-445-4650
Fax: 310-479-0516
Association for Frontotemporal Dementias (AFTD)
Radnor Station Building #2 Suite 320
290 King of Prussia Road
Radnor, PA   19087
info@FTD-Picks.org
http://www.FTD-Picks.org
Tel: 267-514-7221 866-507-7222
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street
Suite 900
San Francisco, CA   94104
info@caregiver.org
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508
National Institute of Mental Health (NIMH)
National Institutes of Health, DHHS
6001 Executive Blvd. Rm. 8184, MSC 9663
Bethesda, MD   20892-9663
nimhinfo@nih.gov
http://www.nimh.nih.gov
Tel: 301-443-4513/866-415-8051 301-443-8431 (TTY)
Fax: 301-443-4279
National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD   20895-3944
info@thefamilycaregiver.org
http://www.thefamilycaregiver.org
Tel: 800-896-3650
Fax: 301-942-2302
Lewy Body Dementia Association
912 Killian Hill Road, S.W.
Lilburn, GA   30047
lbda@lbda.org
http://www.lbda.org
Tel: Telephone: 404-935-6444 Helpline: 800-539-9767
Fax: 480-422-5434
Alzheimer’s Drug Discovery Foundation (formerly, Institute for the Study of Aging)
1414 Avenue of the Americas
Suite 1502
New York, NY   10019
info@alzdiscovery.org
http://www.alzdiscovery.org
Tel: 212-935-2402
Fax: 212-935-2408
Creutzfeldt-Jakob Disease (CJD) Foundation Inc.
P.O. Box 5312
Akron, OH   44334
help@cjdfoundation.org
http://www.cjdfoundation.org
Tel: 800-659-1991
Fax: 330-668-2474
CJD Aware!
2527 South Carrollton Ave.
New Orleans, LA   70118-3013
cjdaware@iwon.com; info@cjdaware.com
http://www.cjdaware.com
Tel: 504-861-4627
Well Spouse Association
63 West Main Street
Suite H
Freehold, NJ   07728
info@wellspouse.org
http://www.wellspouse.org
Tel: 800-838-0879 732-577-8899
Fax: 732-577-8644
National Respite Network and Resource Center
800 Eastowne Drive
Suite 105
Chapel Hill, NC   27514
http://www.archrespite.org
Tel: 919-490-5577 x222
Fax: 919-490-4905
American Health Assistance Foundation
22512 Gateway Center Drive
Clarksburg, MD   20871
info@ahaf.org
http://www.ahaf.org/alzheimers/
Tel: 301-948-3244 800-437-AHAF (2423)
Fax: 301-258-9454
National Hospice and Palliative Care Organization /Natl. Hospice Foundation
1731 King Street
Alexandria, VA   22314
nhpco_info@nhpco.org
http://www.nhpco.org
Tel: 703-837-1500 Helpline: 800-658-8898
Fax: 703-837-1233
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