Cell Lines

The costs of obtaining the samples will be met by the researcher.

For academic/not for profit research: cell lines are free of charge, however, there is an ECACC administration fee of £75 and shipping costs apply per order.

For commercial/for profit research: cell lines cost £125 per line (Association administration fee), plus an ECACC administration fee of £75 and shipping costs apply per order.

Samples are available from:

• People with familial MND, controls and family members
• People with sporadic MND and controls but not other family members
• Over 90% of people with MND in the Collection have a diagnosis of amyotrophic lateral sclerosis (ALS), with cases of progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS) representing less than 5% respectively.
• Nine percent of participants with MND have a known family history of the disease.
• Controls are spouse / partners of the participants with MND
• Family members were collected in two ways: from parents and siblings of those with no family history of the disease (as ‘genetic trios’) and from unaffected members of families where there is a known history of MND.

ECACC Website

This will be sent with all samples that are requested. The fields include: age (at participation), gender, affectation status, diagnostic certainty (El Escorial status) and age of onset.

Mimimum Dataset PDF

We prefer this to be accessed in collaboration with an MND Collections PI, where this is not possible, requests will still be considered.

Data available includes: Clinical history of disease, family pedigree, investigations and results and medications (see PDF for full list). This is a partially complete dataset i.e. not all fields are available for all samples (completion of fields varies for each sample).

If requesting the extended dataset, please consider which fields are most important, as the order of priority will affect the samples available to you.

Extended Dataset PDF

This includes a selection of ~200 samples (a mix of familials and controls) which have passed rigorous Quality Control (QC) and authentication – using independent reference samples from the participants (representing best practice for cell lines). We have a truly infinite supply of these samples and due to having a master for each we are able to limit genetic drift of the cell line. The full (searchable) minimum dataset for these samples is available on the ECACC website.

Browse Familial Range Samples

These include the rest of the samples that are not part of the Familial range ie sporadic samples and remaining controls. In line with other similar collections, 10% of the samples underwent quality control on arrival.

Please note that the minimum dataset is provided for all samples, but the extended dataset needs to be requested at the time of applying for access to the samples. Please also make sure to read the application process and terms and conditions of use before applying. If you have any questions, please email [email protected].

Application Form

You can find out more information about the application for process for MND Collections by clicking the button below. 

Summary of application process

• Access to the UK MND Collections is restricted to studies investigating motor neurone disease and related neurodegenerative disorders, including frontotemporal dementia.
• Access to cell lines is limited to researchers based within the UK. However, access may be granted if the application/project is sponsored by a PI of the Collections. DNA samples and data are available to international researchers.
• Generally, access to the Collections is for a time limited period, from the date of release of samples/data.
• Applicants must have the necessary funding for the research they are intending to undertake.
• Under no circumstances should the applicant attempt to identify or contact any of the participants.
• Applicants must not release any material from the Collections to third parties without the explicit written consent of the MND Association.
• Users are required to provide the MND Association with at least annual updates on the uses of samples or data from the Collections.
• Authors of peer reviewed papers, reporting results from the use of the Collections, can apply for the payment of open access fees by the MND Association. Such research papers should be available within the Europe PMC repository within six months of publication of the paper.
• Applicants must acknowledge supply of samples or data from the UK MND Collections in all methods of dissemination of the research arising from use of material.
• Data should be deposited in a publicly accessible database on first publication or release of the data, whichever is soonest.