Page last updated at 14:53 GMT, Tuesday, 6 January 2009

Appeal for research brain donors

Brain tissue (BBC)
More donors are urgently needed

More people need to donate their brains to medical research if cures for diseases like dementia are to be found, UK scientists say.

They say research is being hampered by a gross shortage of brains and are urging healthy people as well as those with brain disorders to become donors.

Brain research has proved essential for finding new treatments - such as dopamine for Parkinson's disease.

Brain investigator Dr Payam Rezaie called the current situation "dire".

He said thousands more brains were needed to look for the cause and treatments for conditions like autism and Alzheimer's disease.

Most drugs already developed for brain-related diseases have relied on research using human brains
Dr Marie Janson of the Alzheimer's Research Trust

Dr Rezaie, from the Neuropathology Research Laboratory at the Open University, said: "For autism, we only have maybe 15 or 20 brains that have been donated that we can do our research on. That is drastically awful.

"We would need at least 100 cases to get meaningful data. But that is just one example. A lot of research is being hindered by this restriction."

Short supply

Professor James Ironside, of the Human Tissue Authority, which regulates the donation process, said as well as a shortage of diseased brains to study, there was a bigger problem of getting hold of healthy donor brains for comparison.

He said this was down to poor awareness rather than people being squeamish.

BRAIN BANK BREAKTHROUGHS
Discovery of L-dopa treatment for Parkinson's disease
Discovery of amyloid deposition in Alzheimer's disease
Discovery of Lewy bodies in dementia
Discovery of variant Creutzfeldt-Jakob Disease
Discovery of the role of glutamate in Schizophrenia

He helped set up a brain bank in Scotland to collect normal "control" brains from people who had died unexpectedly and needed an autopsy by law to establish the cause of death.

"We were surprised and pleased that over 90% of the relatives approached in this way gave consent." He said more needed to be done to raise public awareness.

Dr Kieran Breen, of the Parkinson's Disease Society, said over 90% of the brains in their bank at Imperial College London were from patients, with the remaining 10% of "healthy" brains donated by friends or relatives of patients.

"It is a question of awareness rather than anything else."

But he said scandals like Alder Hey - where organs were kept without consent - have put some off donating their organs to medical research.

"There is also confusion. Some people are under the impression that if they sign up for a donor card that will include donating their brain for research. But it won't.

BRAIN DONATION
Dr Lorna Wing, a retired expert who studied autism and helped change thinking about the condition as a spectrum disease rather than a single disorder, consented to donating the brain of her daughter, who had autism, after she died unexpectedly aged 49. "My husband and I still mourn her loss. One consolation for us is that we donated her brain and are donating ours in our wills."

"Donor cards are about donating organs for transplant, not for medical science."

He said anyone interested in becoming a donor should contact one of the 15-20 brain banks dotted around the UK.

The Medical Research Council is setting up a network to coordinate the existing brain banks from one central location. It is hoped this will make it simpler for those wanting to donate and for researchers to pool information and resources.

Dr Marie Janson, of the Alzheimer's Research Trust, said: "Donated brains can be an immense help in the fight against dementia and are likely to become more important in the future.

"Most drugs already developed for brain-related diseases have relied on research using human brains.

"Unfortunately dementia research is still severely underfunded, and - if new treatments are not found - the number of people with dementia in the UK could increase from 700,000 to 1.5 million within a generation."

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