Fruitful Project MinE meeting Dublin Dec 2016On December 7th 2016, collaborating researchers and ALS foundations had a fruitful project MinE meeting. Many representatives of the participating countries joined our meeting at the international ALS/MND symposium in Dublin.

Prof. Jan Veldink provided an update about the progress of the project. We are currently on 36% of the funds and thus much work still needs to be done on fund raising.

22,500 DNA profiles

The aim of Project MinE is to find the genetic causes of ALS by sequencing the DNA profiles of:

  • 15,000 ALS patients, and
  • 7,500 controls
  • Total = 22,500

December 2016, a total of 7,959 DNA samples were whole genome sequenced, which shows great progress of our project. Currently, a new batch of 1,200 DNA samples is being sequenced, thanks to Spain, Portugal, Turkey, Ireland and Sweden. Several representatives from the participating countries expressed the ambition to add even more samples in the upcoming year.

We need more funds to achieve the total of 22,500 sequenced DNA profiles and all help is welcome!

Samples and sharing data

Alfredo Iacoangeli and Joke van Vugt discussed issues surrounding data storage and access, also taking the future growth of the project in mind. Researcher Sara Pulit showed all steps that are being performed to get from sample to data. All these steps are very important to have reliable data. Finally, researcher Rick van der Spek showed the partners the Project MinE databrowser, where you can find (anonymous) project MinE data on several genes. This is a great way to share data with other researchers and with research of other diseases. More information about data sharing can be found on the page of the databrowser.

Bernard Muller, one of the founders of Project MinE, speaks about the progress and the need for more funds


In total Project MinE has now led to the discovery of 4 ALS genes:

  1. Tuba4A
  2. TBK1
  3. NEK1
  4. C21orf2

With this great international collaborative effort we will find more genetic causes of ALS/MND, which will speed up the search of effective therapies!

Thank you the ALS Association, the​ MND Association,​ Fundela,​ Instituto Paulo Gontijo, Arsla Charcot, ALS Liga – Ligue SLA,​ ALS Nederland,​ Apela Portugal​ and many other ALS Foundations and institutions involved.

Previous Project MinE meetings