Epidemiology Data | MND Association

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 post

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.

Summary of application process

Summary terms and conditions of use

Access to the UK MND Collections is restricted to studies investigating motor neurone disease and related neurodegenerative disorders, including frontotemporal dementia.
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.

Introduction

Types of data collected/epidemiology areas investigated

Samples

Applying for Data and/or samples

Summary terms and conditions of use

Quick links

For further information and support contact our MND Connect helpline