Project MinE consortium of researchers and ALS foundations – meeting at the ALS/MND symposium 2016 in Dublin

Project MinE is a patient-­driven groundbreaking genetic ALS research.
The project is a worldwide collaboration between ALS centres and foundations.
Find us on research gate.

Data sharing

Project MinE promotes broad, transparant and responsible data sharing.

Summary data

Summary data of Project MinE manuscripts will be published shortly after each publication.
Manuscripts can be found under tab ‘publications’ of the Project MinE Variant Browser.

Variant browser

Project MinE Variant Browser based on 4,383 whole genomes from different European ancestry and GWAS summary statistics.

Sharing data of controls

Project MinE participates in the Haplotype reference consortium , a large reference panel of human haplotypes.


Join Project MinE!

ALS centres are very welcome to join Project MinE if they:

  • have DNA samples of ALS patients (preferably also controls), and
  • if they collaborate with a foundation for fundraising.

Reasons to join forces for ALS centers and researchers

  1. Better price for your genome (negotiations and VAT)
  2. ICT infrastructure up-­and-­running for storage and processing data
  3. Ownership of own data
  4. Possibility to collaborate with all partners (sharing data sets)
  5. Easy access to expertise within project

Please feel welcome to join our next Project MinE consortium meeting during the MND symposium in Boston december 2017.

What clinical data do ALS centers need to collect if they join Project MinE?

For this study, genetic material from both people with ALS and control subjects will be used. Control subjects need to conform to specific requirements. A Standard Operating Procedure (SOP) has been defined for this and can be found here.

Along with genetic material, some minimal clinical data needs to be collected for each individual in Project MinE. This core clinical dataset has been defined for Project MinE and guidelines can be found here. This includes the Edinburgh Cognitive and Behavioural ALS Screen (ECAS).

In addition, each individual can be asked to fill in a questionnaire about life style and environmental factors (form for patients/controls, form for examiners), for international collaborative research into risk factors for ALS.

As part of the European FP7-funded EuroMOTOR and the JPND-funded SOPHIA project, SOPs for neuropathology and blood & urine sample collection have also been developed.

If you’d like to learn more about collaborative data collection, please contact the project office at