One of the world's leading researchers into the degenerative brain disorder Huntington's disease (HD), is urging Scots affected by the condition to get involved in a global rare disease project.
Speaking at the Scottish Huntington's Association (SHA) annual conference in Aviemore, Dr Bernhard Landwehrmeyer from the University of Ulm in Germany, said they were looking for 25,000 people across the globe impacted in some way by HD to sign up for a new research project, Enroll-HD.
“We are looking for people to get involved in all aspects of HD research. We need to pull together a pool of volunteers willing to get involved in all aspects of research not at this stage clinical studies, but behavioural and social research,” he said.
Praising the work of the SHA to improve care and raise awareness of HD, Dr Landwehrmeyer said:
“The more we know about how HD impacts on all aspects of daily life the closer we will be to finding more effective treatments and eventually a cure.”
“The HD community in Scotland is very well organised, so is an ideal recruitment ground for volunteers; anyone touched by the condition, whether friends and family, care professionals or clinicians are all welcome to get involved.”
The Enroll-HD project is being is run by US based foundation CHDI which is investing millions into finding effective treatments for HD. It will be the largest rare disease research project in the world.
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and may cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. It is also hereditary with each child of someone diagnosed at 50% risk of developing the condition themselves. There is currently no cure.
“We are far closer to finding effective treatments for this condition than we were 20 years ago. Last year there were more than 750 research papers written about HD and it is the global HD community that is driving this progress. More than ever before we are sharing experiences and knowledge driven by the determination of everyone impacted by the condition to find a cure,” said Dr Landwehrmeyer.
Around 150 family members affected by the condition, clinicians and researchers gathered for the SHA conference this year, the biggest so far.
“We have heard from our conference speakers that in many ways HD is the most curable incurable brain disorders because we know what causes the condition. It is is now a case of exploring all potential avenues to find effective treatment and eventually a cure,” added SHA chief executive, John Eden.
SHA is the only charity in the country supporting families living with the condition.