THE UK MND DNA Bank was set up in 2003 to find out more about the causes of MND, using DNA from donated samples.
Now, thanks to exciting new developments in research, the samples will soon be used more widely to further our understanding of MND.
Our DNA bank consists of over 3,000 samples, which were donated from people with MND, theirfamily members and healthy participants.
The exciting changes
Originally, we collected two blood samples. One was used to extract DNA, which is now stored at the University of Manchester. The second blood sample was sent to Public Health England in Wiltshire, to create an everlasting supply of DNA, which was done by storing the white blood cells from the sample.
Today, MND researchers are just as interested in the white blood cells as they are the DNA. This is because, thanks to advances in technology, these white blood cells can be used to create cell models of MND. White blood cells can be converted into ‘induced pluripotent stem cells’, which in turn can be turned into motor neurones. Creating motor neurones from blood cells was unimaginable when the DNA bank was first created. These models will be used to further our understanding of MND in the lab, but the samples will not be given to patients.
At the heart of research
We know that investing in research is important to people living with an affected by MND. This is why we have agreed for researchers to use the samples in wider MND research studies (more than just genetic research) to help achieve our vision of a world free from MND.
Dr Belinda Cupid (pictured above), Head of Research at the Association, leads on the project. She said:
“We’ve made great strides in discovering the genes that contribute to MND. There’s more to do, and DNA in the UK MND DNA bank will continue to be an important resource.
However, the next step is to understand why the genetic damage or variations cause motor neurones to die, and this means looking at these genes within cells, ideally motor neurones. It is significant step forward that we can use the cells from the Bank for this too.”
Withdrawing my sample
We have made the decision to allow researchers to use the samples more widely, because we believe that those people who donated a sample would want to invest in future research and advance our understanding of MND in order for us to achieve our vision of a world free from MND. However, we recognise that some people may not wish for their samples to be used outside of genetic research. Therefore, if you would not like your sample to be used in this way, or you would like more information, please contact the Research Development team on 01604 611880 or research@mndassociation.org.