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The MND Association has collected over 3,000 samples in its national DNA Bank, including around 1,500 samples from donors with non-hereditary ALS. The Association intends to sequence the genomes of all these ALS patient samples, with the data to be shared across the Project MinE consortium. The MND Association is committed to raising £800,000 towards the project in the next two years.
The UK MND DNA Bank contains over 3,000 samples donated by people with MND, family members and non-MND controls for use in genetic research to understand the disease. Together with the accompanying, anonymised information on the participants, these blood samples have been used to create an important resource for use by MND researchers now and in the future.
The logistics of the collection of samples for the DNA Bank was based on a ‘hub and spoke’ model. The hub centres were based at the institutes of the Principal Investigators: Professor Ammar Al-Chalabi and Professor Chris Shaw at King’s College London, Professor Pamela Shaw at Sheffield, and Professor Karen Morrison in Birmingham. Each hub centre co-ordinated the collection of samples for a number of spoke centres.
All DNA samples within the DNA Bank are stored in -80°C freezers at Biobanking Solutions within the Centre for Intergrated Genomic Medicine, University of Manchester. The majority of samples are also stored as lymphoblastoid cell lines, cryopreserved in liquid nitrogen at the European Collection of Cell Cultures facility within Public Health England.
We would like to thank people with MND and their families across the UK for their participation in developing this important research resource.
The DNA Bank has been funded by the MND Association, with support from the Wellcome Trust and the Dementias and Neurogenerative Diseases Research Network (DeNDRoN).
Click here for more information about how the DNA Bank samples are used.
The Motor Neurone Disease Association was founded in 1979 by a small group of volunteers with experience of living with or caring for someone with MND. Since then, it has grown significantly, with an ever-increasing community of volunteers, supporters and staff, all sharing the same goal – to support people with MND and everyone who cares for them – and the ultimate vision of a world free from MND. The Motor Neurone Disease Association is the only national charity in England Wales and Northern Ireland focused on MND care, research and campaigning.
MNDA explains the Whole Genome Sequencing Project
Project MinE research in the UK is performed by several experts.
I am the head of the Basic and Clinical Neuroscience Department at King’s College London, and Director of the King’s Motor Neuron Disease Care and Research Centre, a facility that includes our ALS clinic and laboratory and clinical research teams. I lead a group focussed on understanding what causes ALS, what might control the age it starts, and how fast it progresses. My centre coordinates several ALS research projects with European and international partners.
Pamela Shaw is a clinician scientist in Neurology and formerly a Wellcome Senior Clinical Fellow. Since 1991 she has led a multidisciplinary programme encompassing laboratory, clinical and symptom management research. In 2000 she was appointed as Professor of Neurology & Head of Neuroscience, University of Sheffield and Consultant Neurologist, Royal Hallamshire Hospital, where she established the Sheffield Care and Research Centre for Motor Neurone Disorders. She is Associate Director and Chair of the MND Clinical Studies Group for the UK Dementia and Neurodegenerative Diseases Clinical Research Network (DeNDRoN) and Academic Director of the Neuroscience Directorate at the Royal Hallamshire Hospital. She has received numerous awards and, most recently receiving the honour of Dame Commander of the Order of the British Empire (DBE) for services to neuroscience.
Prior to her appointment in 1999 as Bloomer Professor of Neurology, University of Birmingham, Karen Morrison held an MRC Training Fellowship and a Wellcome Trust Clinician Scientist Fellowship at the University of Oxford. She combines basic and clinical research with teaching and clinical neurology, leading a laboratory group investigating molecular genetic mechanisms in the neurodegenerative disorders of motor neurone disease and Parkinson’s disease, which has involved establishing DNA Banks for both conditions. She directs the Birmingham MND Care and Research Centre at the Queen Elizabeth Hospital Birmingham, caring for patients with MND and with specific interests in familial forms of the disease and running clinical trials. She teaches on the topics of neurology and genetics on various university courses and is passionate about public engagement, with frequent talks to lay groups, schools and patient charities.
Christopher Shaw is Professor of Neurology and Neurogenetics at the Institute of Psychiatry, King’s College London. His early training in General Medicine and Neurology was conducted in New Zealand, moving to Cambridge in 1992 on a Wellcome Trust Fellowship to study Neurobiology. In 1995 he moved to the Institute of Psychiatry. He is Director of the Maurice Wohl Clinical Neuroscience Institute and Director of the Centre for Neurodegeneration Research. He is also Co-Lead for the Clinical Neuroscience Clinical Academic Group for King’s Health Partners. His major area of clinical and research interest is in the genetic and molecular basis of motor neurone diseas. He runs a clinic for patients with MND/ALS at King’s College Hospital.