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UK MND Collection samples

Originally called the UK MND DNA Bank, in 2017 it was renamed UK MND Collections to encompass all of the components that make up the MND Collections; the DNA and Cell Banks and an Epidemiology Dataset. The UK MND Collections samples are being used to tell us more about the subtle genetic and environmental factors involved in MND. Over 3,000 people contributed to the UK MND Collections DNA samples and data over the ten years of the collection/recording phase of the project.

The samples are being used for genetic research, to understand the way that variations in our DNA may contribute to why people develop MND. The samples are also used to create models of MND – providing ways to understand why motor neurones die and to develop new treatments.

Two hundred people with MND, together with 200 matched controls, completed an epidemiology questionnaire. These data form the Epidemiology Dataset part of the UK MND Collections. This provides clinical and lifestyle information and in combination with the genetic information helps to identify potential environmental components contributing to disease in people with MND.

Selected research projects involving the UK MND Collections

Project MinE

A major collaboration has been established with an international consortium to whole genome sequence a worldwide collection of DNA samples from people with MND and controls. A genome represents the total genetic makeup of an individual. Known as Project MinE, it is the biggest project of its type in the world. To date, the aim is to sequence 22,500 genomes from samples from 17 countries. Funding from the 2014 'Ice Bucket Challenge', which took social media by storm, has meant that the number of samples from the UK has increased from 1,500 to 2,000. With additional funding provided by our Partnerships with Credit Suisse and the first London City Swim, the overall target for the UK has increased to 2,200. To find out more please visit our blog.

Generation and characterisation of iPSCs from ALS lymphoblasts to model disease pathogenesis and advance drug discovery

Induced pluripotent stem cell (iPSC) technology enables researchers to create and study living human motor neurones in the lab. Professor Chris Shaw, from King's College London, aims to use stored white blood cells from the UK MND Collections to create new iPSC models of MND. Ultimately creating an MND iPSC cell bank, these models will enable researchers to better understand the disease and screen potential new drugs. By the end of 2022, 35 iPSC lines will have been produced and characterised. The research will then move its focus onto looking at the motor neurones that have been generated from these iPSCs.

Withdrawing my sample from the UK MND Collections

If you would like to withdraw your sample from the UK MND Collections, please contact the Research Development team on 01604 611782 or [email protected].

Notice of Processing of Patient Data from MND Collections in New Research Initiative

The Motor Neurone Disease (MND) Association is hereby, after recommendation by the Ethics Committee at King’s College London, publishing a notice regarding processing of patient data contained by MND Collections in a new research project.

The project is led by PrecisionLife, an Oxford based company using an artificial intelligence-based approach to analyse large disease population datasets, which generates much deeper understanding of complex diseases like MND. The press release containing more information on the project can be found here.

MND Collections is an MND Association-funded resource combining more than 3000 blood samples and clinical information from people living with MND as well as from healthy donors. Collected started in 2003 and stopped in 2012. As part of an international collaboration, over 2000 of these samples have been genetically sequenced through the Project MinE consortium. An academic team at King’s College London, led by Prof Ammar Al Chalabi, has created and curated a whole genome sequencing (WGS) database as part of Project MinE.

Under this research initiative PrecisionLife was granted extended clinical sample records from the MND Collections. This involved a formal application to be reviewed by the Association’s Biomedical Research Advisory Panel, a committee of neuroscientists and neurologists with MND expertise which reviews research applications. The Panel recommended that the Association, as custodians of the resource, allow the release of clinical data for the samples. Clinical data from the database owned by and held at King’s College London has been licensed to PrecisionLife.

Sample donor confidentiality was assured by anonymisation of the data, and does not constitute personal data (as defined in the Data Protection Legislation).

We would like to thank all participants, donors and carers, without who this invaluable research resource would not exist.