Devon and Cornwall Motor Neurone Disease study
Please note that we are no longer recruiting people to the Devon and Cornwall Motor Neurone Disease study. The following information is included for reference only.
Background
Motor neurone disease (MND) is a neurological condition for which no clearly identified cause has been found. Recent research points towards MND being caused by both genetic and environmental factors. The study aims to be the first in the South West to try to answer questions regarding environmental risk factors for MND.
Another important aim of the study is to assess the usefulness of the quality of life/health status questionnaires currently available for use in people with MND. Some of these questionnaires may relate only to MND (‘disease specific’) while some are relevant to people with any chronic neurological condition (known as ‘generic’ questionnaires).
What sort of study is it?
This type of study is known as an epidemiological study. This means that people with MND are identified within a geographical area to find out what proportion of the population in that area has MND.
Would I be suitable for this study?
Please note that we are no longer recruiting. This information is for reference only.
We are looking for people with MND aged at least 18 years and living in Devon or Cornwall to take part in the study.
Do I have to take part?
It is up to you to decide whether or not to take part. If you do decide to take part you may like to print out this information. If you express an interest you will be sent an information sheet and two copies of the consent form (one to sign and return and one to keep for your information). If you consent to take part you are free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect the standard of care you normally receive.
What does the study involve?
All participants will be asked to complete a short questionnaire relating to environmental risk factors, and a second questionnaire about quality of life and health status. The second questionnaire will be repeated at six monthly intervals for a maximum of two years to help us to see if the questionnaire can pick up changes in your illness over time.
How long will the study last?
If you decide to take part, your participation will be for a maximum of two years.
Will I need to take any new medication?
This study does not involve the taking of any new medications. If you are already taking medication relating to any medical condition this will not be changed or affected.
Will there be any restrictions to my lifestyle?
This study will not be asking you to alter your lifestyle in any way.
What are the advantages of taking part?
You will be helping in a study which aims to identify risk factors for developing MND and which will therefore enhance our understanding of the possible causes of MND. The aim of completing the quality of life/health status questionnaires is to help us to understand how MND affects people with the disease.
Will my family Doctor be informed?
If you decide to take part in the study, your General Practitioner (GP) will be informed of your participation. Both your GP and your hospital doctor will have received information about our study.
Will my information and records be confidential?
All health records or information will be kept strictly confidential. Only members of the study team will have access to any data arising from the study.
Who is organising the research?
The research is being led by Dr Liz Househam, Prof John Zajicek and Dr Jeremy Hobart of the Clinical Neurology Research Group within the Peninsula Medical School.
Who has reviewed the study?
This study has been reviewed by the South West Devon Local Research Ethics Committee.
What will happen to the results of the study?
We hope to publish results of our study in a scientific journal. A copy
of the results will be available to those who wish to receive it. We may
also contribute information to other study centres in the U.K. to enhance
our knowledge of MND on a national scale.
Click here for our 'Contact us' page to get more information about the MND Study.
We are no longer recruiting people to the Devon and Cornwall Motor Neurone Disease study. The above information is for reference only.