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This study will characterise patients and asymptomatic family members who carry the C9orf72 gene mutation, and create a national register of this cohort.

Study aims

ACORN is a national research study aimed at understanding more about the genetic basis of Motor Neuron Disease (MND) and Frontotemporal Dementia (FTD)

This exciting area of research could contribute to the development of new therapeutic strategies and neurochemical biomarkers for these neurodegenerative diseases

As a part of the study, we will create a national register of MND and FTD patients and their family members, for future research.


The study is funded by the Oxford NIHR Biomedical Research Centre (Preventive Neurology theme), and through a generous gift from the Alan Davidson Foundation to the Oxford MND Care and Research Centre

Get involved

For more information, or to register your interest in participating (as a patient, family member or healthy volunteer) in this study, please contact the ACORN study team by email at: or by phone at: 01865 228-371 


For information on getting involved in general research through the Oxford NIHR Biomedical Research Centre, please visit