What does Project MinE do?

About

To understand the genetic basis of ALS and to ultimately find a cure for this devastating, fatal neuromuscular disease, Project MinE aims to analyse the DNA of at least 15,000 ALS patients and 7,500 controls. The resulting 22,500 DNA profiles will be compared.

 

 

Unprecedented scale

 

Such large-scale genetic research into the origins of ALS is unprecedented! As such, we are fully committed to making a revolutionary breakthrough in the search for the cause of ALS. But, to reach our goals, we need your help.

 

 

No treatment yet

 

More than 200,000 people worldwide are living with Amyotrophic Lateral Sclerosis (ALS), otherwise known as Motor Neuron Disease (MND) or Lou Gehrig’s disease. Relatively little is known about the cause of this progressively degenerative neurological disease. There is still no treatment. The average life expectancy of ALS patients is three years.

 

 

Find a cure

 

It is almost certain that the disease has a genetic basis. Project MinE is a large-scale research initiative devoted to discovering the genetic cause of ALS. The ultimate goal is to identify genes that are associated with ALS. The function of these genes may lead to disease pathways for which treatment can be developed.

 

 

Help us

 

In order to reach this ambitious objective, we plan to map the full DNA profiles of at least 15,000 people with ALS and compare them to DNA profiles of 7,500 control subjects to uncover associations between specific variations in genes and ALS. This type of comparative research requires enormous numbers of DNA profiles and is very costly. That is why we need your help. Make a donation or start a campaign today! Project MinE, make it yours!

What is ALS?

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, Charcot disease, or motor neuron disease (MND), is a very serious and debilitating neurodegenerative disease.
In patients with ALS, the motor nerve cells (motor neurons) in the spinal cord, brainstem, and brain progressively deteriorate and die. Motor neurons stimulate the muscles in the body to action. Since fewer signals are sent to the muscles by the dying nerve cells, the disease leads to progressive muscle weakness.
ALS can strike at any adult age, but most often onset of the disease occurs between the ages of 40 and 60. The speed at which ALS progresses varies per person, but the average life expectancy is three years after disease onset.
Only a small portion of the cases of ALS can be attributed to a familial form of the disease. In all other cases, the precise cause of ALS is not known, although the cause is almost certainly (partly) genetic. There is no cure and still no effective treatment for ALS.

How is the data generated?

Whole genome sequencing (WGS) is the foundation of data generation at Project MinE, enabling comprehensive genetic analysis to uncover insights into ALS. Participants, including patients and healthy controls, are recruited only after providing informed consent, ensuring ethical compliance and privacy. DNA is extracted from blood samples and sequenced using advanced technologies to map the genome, and the resulting data is added to the Project MinE database.

Where is the data stored?

The Project MinE data is currently stored at SURFsara, a secure and high-performance computing platform in the Netherlands. To enhance accessibility and collaboration, the project is transitioning to include data storage on DNAnexus, a cloud-based platform designed for managing and analyzing genomic data. This ensures the data is stored securely while being readily available for cutting-edge research.

Project MinE promotes broad, transparent and responsible data sharing.

One of the main goals of Project MinE is to have its dataset accessible to all qualified researchers conducting health-related research in the public interest, ensuring fair and unbiased availability without preferential or exclusive access.

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