Introduction to the UK MND Collections
The UK MND Collections (formerly known as the UK MND DNA Bank) is a resource, combining more than 3,000 blood samples and accompanying clinical information; as well as epidemiology data from 400 participants, including people with MND, controls and family members.
The DNA Bank was the original Collection of over 3,000 blood samples, which are stored at CIGMR (Centre for Integrated Genomic Medical Research) in Manchester, UK. The DNA Bank also has clinical information (divided into a minimum and extended dataset) which is available to researchers.
The Cell Lines Collection offers a sub set of the DNA Bank samples as lymphoblastoid cell lines and peripheral blood lymphocytes. This was originally set up as a back-up for the DNA Bank samples running out. However, these cell lines have proven to be an excellent resource in their own right and also enable the creation of induced Pluripotent Stem Cells (iPSCs).
The Epidemiology Collection has just over 200 patient and matched control surveys that include extensive environmental and lifestyle data (both from self-report questionnaires and telephone interviews) as well as a subset of genomic DNA samples.
Combining all three collections produces a very rich dataset for researchers to use to study MND. A heartfelt thank you to all participants, without whom this invaluable resource would not exist.
How to apply for samples or data
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. If you have any questions, please email firstname.lastname@example.org.
- 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.