Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. Typically, onset of symptoms occurs at about age 60. There are three major categories of CJD:  sporadic CJD, hereditary CJD, and acquired CJD. There is currently no single diagnostic test for CJD. The first concern is to rule out treatable forms of dementia such as encephalitis or chronic meningitis. The only way to confirm a diagnosis of CJD is by brain biopsy or autopsy. In a brain biopsy, a neurosurgeon removes a small piece of tissue from the patient's brain so that it can be examined by a neurologist. Because a correct diagnosis of CJD does not help the patient, a brain biopsy is discouraged unless it is need to rule out a treatable disorder. While CJD can be transmitted to other people, the risk of this happening is extremely small. There is no treatment that can cure or control CJD. Current treatment is aimed at alleviating symptoms and making the patient as comfortable as possible. Opiate drugs can help relieve pain, and the drugs clonazepam and sodium valproate may help relieve involuntary muscle jerks. About 90 percent of patients die within 1 year. In the early stages of disease, patients may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur. The leading scientific theory at this time maintains that CJD is caused by a type of protein called a prion. The harmless and the infectious forms of the prion protein are nearly identical, but the infectious form takes a different folded shape than the normal protein. Researchers are examining whether the transmissible agent is, in fact, a prion and trying to discover factors that influence prion infectivity and how the disorder damages the brain. Using rodent models of the disease and brain tissue from autopsies, they are also trying to identify factors that influence the susceptibility to the disease and that govern when in life the disease appears. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=creutzfeldt+jakob+disease[majr]+AND+human[mh]+AND+english[la]+AND+(review[ptyp]+OR+review+literature[mh]+OR+practice+guideline[ptyp]+OR+guideline[ptyp]+OR+clinical+trials[mh]+OR+clinical+trial[ptyp]+OR+consumerj[sb])&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=5+Years http://www.nlm.nih.gov/medlineplus/creutzfeldtjakobdisease.html 1 http://clinicaltrials.gov/ct2/results?term= /disorders/cjd/pubs_cjd.htm /disorders/cjd/xml_cjd.xml xml_cjd.xml V10 Alzheimer's Association

225 North Michigan Avenue

Floor 17 Chicago IL 60601-7633 info@alz.org http://www.alz.org 312-335-8700 1-800-272-3900 (24-hour helpline) TDD: 312-335-5886 866.699.1246 National voluntary health organization committed to finding a cure for Alzheimer’s and helping those affected by the disease. V696 Centers for Disease Control and Prevention (CDC)

U.S. Department of Health and Human Services

1600 Clifton Road, N.E. Atlanta GA 30333 inquiry@cdc.gov http://www.cdc.gov 800-311-3435 404-639-3311/404-639-3543 V293 Creutzfeldt-Jakob Disease (CJD) Foundation Inc.

P.O. Box 5312

Akron OH 44334 help@cjdfoundation.org http://www.cjdfoundation.org 800-659-1991 330-668-2474 Non-profit, volunteer foundation that promotes research, education, and awareness of CJD and reaches out to people affected by CJD. V91 National Organization for Rare Disorders (NORD)

55 Kenosia Avenue

Danbury CT 06810 orphan@rarediseases.org http://www.rarediseases.org 203-744-0100 Voice Mail 800-999-NORD (6673) 203-798-2291 Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. V847 CJD Aware!

2527 South Carrollton Ave.

New Orleans LA 70118-3013 cjdaware@iwon.com; info@cjdaware.com http://www.cjdaware.com 504-861-4627 Non-profit organization established for support, information sharing, and advocacy. V9 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.nia.nih.gov/alzheimers 1-800-438-4380 301-495-3334 V73 Family Caregiver Alliance/ National Center on Caregiving

785 Market St.

Suite 750 San Francisco CA 94103 info@caregiver.org http://www.caregiver.org 415-434-3388 800-445-8106 415-434-3508 Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs. V825 Department of Agriculture (USDA)

National Agricultural Library

10301 Baltimore Avenue Beltsville MD 20705-2351 http://www.nal.usda.gov 301-504-5755/301-504-6856 (TDD/TTY) 301-504-6927 V638 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 301-827-4573 888-INFO-FDA (463-6332) V811 World Health Organization

Avenue Appia 20

1211 Geneva 27 Switzerland info@who.int http://www.who.int (+ 41 22) 791 21 11 (+ 41 22) 791 3111