Epi Epi Epi, Oi Oi Oi

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Mention the word Epidemiology and instantly my mind conjures up the Centre for Disease Control (CDC) in America being swarmed by zombies or men in bright orange astronaut-type suits in The Crazies.  While it’s true that it includes studying highly infectious diseases and how they spread (zombies and end of world scenarios aside!), it can be applied to any disease.

Having spent much of my time in the last year working on the data that was collected from our recent epidemiology study, I was keen to shout about the fact that the data is now ready for researchers to use. The analysis of this data will add great value to samples that we already have in our DNA Bank.

What is Epidemiology?

In MND, this is about identifying risk factors of the disease from a person’s lifestyle and the environment they live in, and looking at how these interact with a person’s genes.

Once we’ve collected data (eg where someone lives, their medical history, their hobbies) from large numbers of people, these factors can then be investigated to see if they link to an increased chance of getting MND. If there is a link found, this then becomes a ‘risk factor’ for the disease. You can view some of our previous posts on possible risk factors such as formaldehyde, pesticides, smoking and magnetic fields.

Being certain that something is a risk factor is tricky.  It is not uncommon that one research study into a risk factor shows a possible link and another study doesn’t. Results from many previous epidemiology studies for MND have been inconclusive, so it’s important to keep collecting data to add to previous studies.

This field of research is very important because if we can find risk factors of a disease, we can either try to avoid them (eg stopping smoking) or use appropriate treatments (eg high blood pressure can be reduced with medication).

Our Epidemiology study…

Our data was collected in the form of two questionnaires from each participant.  Participants filled out a survey that was sent to them in the post, and then later a research nurse rang them to do a second questionnaire over the phone.  Questions on the surveys were wide, ranging from employment and residence history, smoking and alcohol intake, to medical history and hobbies.

People with MND were mainly recruited from our previous DNA Bank study, for which they had already given a blood sample.  Matched control participants were anonymously recruited from patients’ GP centres to match similar geographic areas.

Blood samples (genetics bit) were also taken and these will be analysed alongside the questionnaire data (environmental bit) to find possible links. Throughout the data-collection period (2009-2015), we acquired data from just over 400 participants (including approx. 200 patients and 200 matched controls).

An online database was created so that the nurses at different centres could contribute their questionnaire data.  When data collection finished this online database was closed and the data were exported to a static database, which became ready for use by researchers at the end of 2016.

The first research group to be analysing our data is Prof Ammar Al-Chalabi’s lab at King’s College London.  They received the data in November 2016. When the data is analysed, it will be combined with the data from the STRENGTH project to increase the statistical power of the data.

There are many research groups looking into the possible risk factors associated with MND. View epidemiology abstracts from last year’s Symposium in Dublin or the ‘Why me’ page on our website.

You can also read more about the journey of a DNA Bank sample in the MND Association’s latest issue of ThumbPrint.

With special thanks to…

every participant for taking the time to fill out the questionnaires, all of the research nurses who collected the data, the Wellcome Trust and Middlemass family helping fund the study, and all of our researchers who will be analysing the data.

*Epi Epi Epi, Oi Oi Oi: no Cornish pasties or BAFTA winning Welsh actresses were harmed in the making of this blog.

Sarah Thompson (author)

Sarah is part of the MND Association’s Research Development team. In her role as a Research Information Co-ordinator, she oversees applications and sample use from the UK MND Collections. She also looks after the abstract submissions for the International Symposium on ALS/MND.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.