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Last Updated: Friday, 21 May, 2004, 10:25 GMT 11:25 UK
CJD drug study to start in weeks
Jonathan Simms
Jonathan Simms is one of those receiving experimental drugs
A long-awaited study to test possible treatments for vCJD could start within weeks, say officials.

The Department of Health ordered a fast-track trial of potential treatments three years ago.

However, the trial has been dogged by delays with reports that key researchers could not agree on how the study should be run.

The Medical Research Council, which is leading the trial, says it will get underway "in a few weeks".

Experimental treatments

The trial will assess experimental treatments for the range of Creutzfeldt-Jakob diseases, including vCJD or the human form of BSE.

The Department of Health originally ordered the trial in 2001 to examine if a drug called quinacrine, normally used to treat psychosis, could help people with vCJD.

We hope it will get underway in the next few weeks
Medical Research Council

It followed the case of Rachel Forber, a 21-year-old woman from Liverpool who had been diagnosed with the disease.

She was bed-ridden and required constant care before taking the drug. Within three months of starting treatment she was able to get out of bed, walk unaided and even swim without support.

However, Rachel died at the end of 2001. It is thought she was taken off the drug after complications affecting her liver.

The trial will also examine the effectiveness of another potential treatment, pentosan polysulphate.

The unlicensed drug was first given to a Belfast teenager with vCJD in 2002. It is directly injected into the brain. The family of Jonathan Simms say it has helped to stablise his condition.

"Despite everything we were told, he remains stable," his father Don told BBC News Online.

The Medical Research Council said the study had been difficult to organise.

"It has been very complex," a spokeswoman told BBC News Online. "We have been breaking new ground."

But she added: "The study has now received ethical approval and we hope it will get underway in the next few weeks."

Potential test

The trial could also assess the effectiveness of a potential test for vCJD.

Dr Chris Pomfrett, a neurophysiologist based at Manchester Royal Infirmary, has developed an electrocardiogram system used in heart monitoring which he believes can spot early signs of the disease.

The test was developed with 112,000 of government money. Tests on animals suggest it does work. However, Dr Pomfrett has been unable to get access to patients with the disease to see if it works on humans.

"We are looking at whether it can be included in the clinical trials," said a spokesman for the Department of Health.

"This test needs to be tested," said Don Simms.

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