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CDC investigating CJD cluster in N.J.

By STEVE MITCHELL, Medical Correspondent

WASHINGTON, Jan. 22 (UPI) -- Although the Centers for Disease Control and Prevention has said publicly there is no rise in Creutzfeld-Jakob disease cases in New Jersey, United Press International has learned the agency is investigating cases there.

On Wednesday, the CDC requested more information about recent cases from a woman who insists there is an increase of the rare brain disorder in the state.

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Janet Skarbek, an accountant in private practice in Cinnamonson, has been collecting information about CJD cases in New Jersey since June and has identified seven cases of the fatal disease in a three-county area in the southern part of the state in the last four years.

Skarbek thinks some of the cases could be due to the consumption of meat infected with mad cow disease, which can cause a form of the fatal brain illness called variant CJD in humans. Public health officials have not linked any of the cases to tainted meat and say all appear to consist mainly of a spontaneous form of the disease known as sporadic CJD.

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Recently Skarbek identified three more cases -- one confirmed and two possible -- tied to the area, as first reported by UPI on Wednesday.

The cluster has received renewed attention following the discovery of a mad cow in Washington last month, but the CDC and the New Jersey Department of Health and Senior Services in Trenton say there is no rise in CJD cases in the area or anywhere in the state.

However, Dr. Larry Schoenberger, a medical epidemiologist in the CDC's National Center for Infectious Diseases in Atlanta, called Skarbek Wednesday and left a message on her answering machine, requesting she fax him all the information she has about the cases.

"The best way to handle it ... is that you make the list of the information you have and submit it," Schoenberger, who heads up the agency's national CJD program, said in the message. He asked her to fax the relevant information to a number at the CDC "so we can follow up appropriately."

Schoenberger also explicitly expressed interest in the three additional CJD cases Skarbek has identified, saying, "I'd like to follow through" with those cases.

Schoenberger did not return phone calls from UPI.

According to state health department statistics, seven people have died from CJD in southern New Jersey over the four-year period from 2000-2003. The new confirmed case identified by Skarbek that occurred in September would make eight for that region -- an unusually high number for a rare disease that scientists think only strikes one in a million people. The region where the cases have occurred has a population of 1.2 million.

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Skarbek said she faxed the requested information, but added she is skeptical the CDC will follow up on it. She faxed the same information earlier this month at Schoenberger's request and the agency later denied having received the documents.

CDC spokesman Tom Skinner reiterated that position to UPI Tuesday, saying Skarbek had failed to fax the information after Schoenberger had requested it on Dec. 31.

"The information Skarbek has she has not shared with the New Jersey Department of Health or with us other than conversations on the phone," Skinner said.

Skarbek, however, claimed she faxed the information on Jan. 2. In addition, she said she previously has left voicemail messages about the cases with various people at the CDC and sent information via e-mail to the CDC-funded National Prion Disease Pathology Surveillance Center at Case Western Reserve University in Cleveland, as well as the state department of health.

"I'm glad Schoenberger returned my call and I'm glad he has the information" Skarbek told UPI. "At least now I've got proof and the CDC can't any longer say they don't have it."

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Steve Mitchell is UPI's Medical Correspondent. E-mail sciencemail@upi.com

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