Research project stalled by funding withdrawl
A leading research scientist working to prevent the neurological deficits in some types of congenital hydrocephalus cases is struggling to find funding for the project.
Dr Jaleel Miyan, Senior Lecturer in Biomolecular Sciences at Manchester University's renowned Institute of Science and Technology (UMIST), is leading a research team doing ground breaking work on the underlying biology of the condition. ASBAH has agreed in principle to support the research and is seeking funds for the purpose.
After eight years of intensive research the team is convinced they can prevent and even potentially reverse the arrested development of the brain that occurs when the fluid in the brain is obstructed. Moreover, they believe that in the future many cases of congenital hydrocephalus could potentially be diagnosed by a blood test early in pregnancy.
The lack of funding is now hampering the work and the scientists need £30,000 a year to maintain the vital research. The project was backed by the Wellcome Trust for six years, but the organisation has recently been forced to reduce its funding of all research programmes. The team has now applied for funding to the Medical Research Council and Cerebra, the Welsh foundation for the brain injured infant, and is keeping its fingers crossed for a successful outcome.
The current treatment for hydrocephalus - shunting - relieves the pressure of fluid around the brain, but does not rectify the abnormal development of the cerebral cortex; children continue to suffer a range of neurological deficits even after shunting. Dr Miyan's research project has been working to identify molecules within the CSF which are responsible for the abnormal development of the cerebral cortex, to see how they work. “We now know that there is something in the fluid that stops cells dividing in the brain. We know that the cells are normal and we now need to identify this molecule so that we can stop it and allow the brain to fully develop. It would be a dream come true to unlock the potential brain in these children,” he says.
When asked about possible prevention, he added: “There is data that led me to believe that around 60 per cent of all cases of foetal hydrocephalus could be prevented by blocking specific interactions between mother and foetus at critical stages of development. Susceptible pregnancies could be identified by simple blood tests in the early stages of pregnancy and mothers treated to protect the developing foetus.
“Hydrocephalus is not directly caused by a genetic defect (except x-linked hydrocephalus), but by interactions with some environmental factor which we think it should be possible to detect through a blood test.”
It is a very frustrating time for the research team, and in particular Dr Miyan, who has first hand knowledge of living with a child with a neurological condition: his stepdaughter Michaela was born with SB/H. Sadly, she died of a shunt blockage in 1986 at the age of ten.
Dr Miyan says: “I feel we can now see light at the end of the tunnel, so it's very frustrating to have run out of money. Funding would allow us to prove the principle that CSF is a causative factor and then we can examine potential treatments.
“It's so difficult to get funding these days because money is mostly made available to research diseases, not conditions such as hydrocephalus, because it's believed that conditions don't have one specific cause. However, our interest is in the outcome of fluid obstruction which is the same whatever the cause,” he says.
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