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Barbara Thuss is project co-ordinator for Project MinE, an international initiative with the aim of sequencing at least 15,000 MND genomes. We announced earlier today that the MND Association is funding the UK-arm of this initiative, known as the Whole Genome Sequencing project. Here Barbara explains more about Project-MinE.

Although the precise cause of MND is still unknown, in recent years it has become increasingly clear that this devastating and fatal disease of the motor neurons has a genetic basis. Project-MinE is an ambitious international research initiative aimed at detecting genetic causes and risk factors for MND. The project has been initiated by two people living with MND, along with the ALS research group in the Netherlands.


Discovery of genes that are associated with MND may lead to the identification of disease pathways and disease mechanisms. This knowledge can be used to develop new treatments and suggest lifestyle changes.

The project

To obtain sufficient power to identify all the genetic variants in MND the DNA of at least 15,000 people living with MND and 7,500 control subjects (in total over 22,500 DNA profiles) needs to be analysed. Because of these high numbers, and the rarity of MND, the project requires an international approach. Genetic research into the origins of ALS on this scale is unprecedented, but is needed if we are to achieve our commitment of making a revolutionary breakthrough in understanding the disease.

An international consortium of scientific ALS/MND institutes is currently being set up. Next to our own centre in the Netherlands, institutes in Belgium, Ireland, France, Germany, Spain, Portugal, USA, Australia and of course the UK are participating in the project. Talks are still on-going with colleagues in Turkey and Israel.

Each institute is supported by their local national ALS/MND foundation, such as the MND Association of the UK. An official kick-off meeting with all partners (scientific centres and foundations) is planned for September 2014 in The Netherlands.

Do visit the website if you’d like to read more about the project and want the latest news. Alternatively, you can read about the UK initiative, the Whole Genome Sequencing project, here.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.

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