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: [email protected]
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: [email protected]
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: [email protected]
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: [email protected]
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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] 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 [email protected] http://www.cjdfoundation.org Tel: 800-659-1991 Fax: 330-668-2474 |
| CJD Aware! 2527 South Carrollton Ave. New Orleans, LA 70118-3013 [email protected]; [email protected] http://www.cjdaware.com Tel: 504-861-4627 |
Well Spouse Association 63 West Main Street Suite H Freehold, NJ 07728 [email protected] 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 [email protected] 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 [email protected] http://www.nhpco.org Tel: 703-837-1500 Helpline: 800-658-8898 Fax: 703-837-1233 |
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.
Last updated March 23, 2011