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Introduction

The Epidemiology data is the newest addition to the MND Collections, collected between 2010 and 2015. Data are available for 200 patients and 200 controls. The data were collected in the form of two questionnaires: participants first filled in a self-report questionnaire and then had a follow up telephone interview conducted by a research nurse. Unlike the DNA Bank and Cell lines, the controls in the epidemiology study are not spouse controls, they are age, gender and geographically matched controls (recruited from the same GP surgery as the patient).

Types of data collected/epidemiology areas investigated

Broadly information collected included: residential history, job history, pesticide/metal/radio wave exposure, medical history and lifestyle factors (eg alcohol and smoking). Not all fields are complete for all participants eg not every participant has had a head injury or been exposed to pesticides.

Full list of data fields

Epidemiology blog

Samples

As well as the questionnaire data, there are accompanying samples for most of the participants. These are available as genomic DNA from CIGMR and a small number are available as lymphoblastoid cell lines from ECACC (please see the DNA Bank or Cell line pages for more information or contact MNDCollections@mndassociation.org).

Applying for Data and/or samples

Please read the MND Collections terms and conditions and complete an epidemiology application form to access the data. A separate application form is required to access DNA or cell line samples.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262