Looking for MND genes: Project MinE update

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Project MinE is an international genetics project that is analysing DNA from people with MND in detail.

For the majority of people with MND, the disease appears ‘sporadically’ for no apparent reason. For a small number of people, approximately 5-10% of those with MND there is an inherited link, in other words the disease runs in their families.

We know a lot about the genes that are damaged in the rare inherited forms of MND. We also know that very subtle genetic factors, together with environmental and lifestyle factors contribute to why the majority of people develop the disease. These subtle genetic factors are very hard to find.

The goal of Project MinE is to find the other genes that cause inherited MND and help us find out more about these subtle genetic risk factors.


Project MinE was born when Dutch entrepreneur Bernard Muller challenged his neurologist to do something with all the DNA samples in his freezer – samples being stored there for future analysis. ‘Why can’t those samples be analysed now?’ was his question. That was two years ago!

How is the DNA analysed?

The technique used in this analysis is called whole genome sequencing. It is the most detailed analysis tool available to decode our DNA – and until recently was too expensive to be used in research projects. (Think of this technique as like a search engine that, rather than searching on words, is conducting its search on letters, or perhaps groups of a few letters).

Thousands of samples are being provided for Project MinE by over 16 countries around the world, including the UK. Now, thanks in part to the funds raised by the Ice Bucket Challenge around the world 4,500 DNA samples have been analysed by whole genome sequencing as part of Project MinE, from a target of 22,500 samples.

To date the MND Association has sent two batches of samples, which totals 1,400 samples at a cost of £1.4 million. These samples are from the UK MND DNA Bank that the MND Association is the custodian of, and include DNA from people with the sporadic form of MND as well as control samples.

Data issues

The art of analysing data is becoming increasingly important in MND research, creating a new field of research called ‘bioinformatics’. The researchers in this field are geneticists, statisticians and computer scientists – and their skills are being used in spotting trends, patterns and making new discoveries with genetic data, both on its own and by connecting data from different sources.

Perhaps unsurprisingly, analysing thousands of DNA samples in such fine detail generates staggering amounts of data. The data from Project MinE is being stored on a computer at the Dutch Space Centre – space research is known for generating vast amounts of data so the infrastructure is already set up. Researchers are now starting to look at how the data being ‘churned out’ by whole genome sequencing can be read and interpreted.

At the beginning of this year two new MND Association funded non-clinical research fellows began their research projects. You will be able to read more about these projects in the Spring edition of Thumb Print, out next month.

Both projects will be using data from Project MinE and other genetic research projects to tell us more about how gene variations contribute to MND. This could be working out whether it is a gene variation that causes MND in the rare, inherited form of MND or learning more about the subtle genetic contributors to all forms of MND.

More information

You can find more information on Project MinE in earlier blog posts, and on the Project MinE website. Further information on the UK part of Project MinE, the UK Whole Genome Sequencing Project, is on our website.

Dr Ashley Jones (King’s College London) holds one of our new non-clinical fellowship awards. His research is featured in our current fundraising appeal ‘See more clearly’.

More information on all of the research projects we fund is available on our website and in our newly updated information sheet.

Our application system is now open for researchers to apply for our PhD studentships grants and for our non-clinical fellowship awards. The deadline for summary applications, submitted online is Friday 29 April 2016. More information is available on our website.

5 thoughts on “Looking for MND genes: Project MinE update

  1. I believe that you will find that there are many less sporadic cases of MND when this research is finished. My father was told he had sporadic MND and after he died because I asked for further testing with the new genes that had been identified as causing MND it was discovered it was a genetic form after all. I has been passed down to me and my children. Not a good future to look forward to. I do hope there will be some breakthrough in my lifetime. My children hope they can have treatment on their eggs to remove the faulty gene and eradicate it from our family.

    1. My boyfriend having MND at age 32, we hope will have a treatment and make his recover from the sickness as well. We have to keep the wish and hope all people whose have MND get well soon!

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