In this Article

• What is Creutzfeldt-Jakob disease (CJD)?
• What are the symptoms of the Creutzfeldt-Jakob disease?
• How is Creutzfeldt-Jakob disease diagnosed?
• How is the Creutzfeldt-Jakob disease treated?
• What causes Creutzfeldt-Jakob disease?
• How is Creutzfeldt-Jakob disease transmitted?
• How can people avoid spreading Creutzfeldt-Jakob disease?
• What research is taking place with Creutzfeldt-Jakob disease?
• How can I help research?
• Where can I get more information about Creutzfeldt-Jakob disease?
• Creutzfeldt-Jakob Disease Glossary
• Creutzfeldt-Jakob Disease Index

How Can I Help Research?

Scientists are conducting biochemical analyses of brain tissue, blood, spinal fluid, urine, and serum in hope of determining the nature of the transmissible agent or agents causing Creutzfeldt-Jakob disease. To help with this research, they are seeking biopsy and autopsy tissue, blood, and cerebrospinal fluid from patients with CJD and related diseases. The following investigators have expressed an interest in receiving such material:

Dr. Pierluigi Gambetti, Director
National Prion Disease Pathology Surveillance Center
Institute of Pathology
Room 419, Case Western Reserve University
2085 Adelbert Road
Cleveland, OH 44106
Telephone: (216) 368-0587
Fax: (216) 368-4090
Email: cjdsurv@cwru.edu
Website: http://www.cjdsurveillance.com/

Dr. Laura Manuelidis
Yale University School of Medicine
Section of Neuropathology
310 Cedar Street
New Haven, Connecticut 06510
Telephone: (203) 785-4442

Dr. Stephen DeArmond or Dr. Stanley Prusiner
Department of Pathology/Neuropathology Unit
HSW 430
University of California, San Francisco
San Francisco, California 94143
Telephone: (415) 476-5236

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 Association
225 North Michigan Avenue
17th Floor
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

Centers for Disease Control and Prevention (CDCP)
U.S. Department of Health and Human Services
1600 Clifton Road, N.E.
Atlanta, GA 30333
inquiry@cdc.gov
http://www.cdc.gov
Tel: 800-311-3435 404-639-3311/404-639-3543

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

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

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

Alzheimer's Disease Education and Referral Center (ADEAR)
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

National Hospice and Palliative Care Organization /Natl. Hospice Foundation
1700 Diagonal Road
Suite 625
Alexandria, VA 22314
nhpco_info@nhpco.org
http://www.nhpco.org
Tel: 703-837-1500 Helpline: 800-658-8898
Fax: 703-837-1233

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

Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street
Suite 1100
San Francisco, CA 94104
info@caregiver.org
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508

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

Department of Agriculture (USDA)
National Agricultural Library
10301 Baltimore Avenue
Beltsville, MD 20705-2351
lending@nal.usda.gov
http://www.nal.usda.gov
Tel: 301-504-5755/301-504-6856 (TDD/TTY)
Fax: 301-504-6927

Food and Drug Administration (FDA)
U.S. Department of Health and Human Services
5600 Fishers Lane, CDER-HFD-240
Rockville, MD 20857
http://www.fda.gov
Tel: 301-827-4573 888-INFO-FDA (463-6332)

World Health Organization
Avenue Appia 20
1211 Geneva 27
Switzerland, info@who.int
http://www.who.int
Tel: (+ 41 22) 791 21 11
Fax: (+ 41 22) 791 3111

SOURCE: National Institute of Neurological Disorders and Stroke, National Institutes of Health

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