You are invited to take part in a research study. In order to help you decide if you wish to participate, we would like to share with you why the research is being done and what it will involve.
Why have I been invited?
You have been invited because you have a relative who has been diagnosed with Motor Neurone Disease (MND)/Amyotrophic Lateral Sclerosis (ALS). Participation in this study is entirely voluntary.
What is this study about?
We are looking to understand better how being a family carer for someone living with MND impacts the carer’s wellbeing. This research aims to help us learn how to better support family carers of people with MND.
Who is organising this study?
This study is being led by Professor Eneida Mioshi from the Faculty of Medicine and Health Sciences, University of East Anglia in the United Kingdom.
What is my part in this study?
As a family member of someone with Motor Neurone Disease, we are asking you to complete some questionnaires about your personal wellbeing, family, relationships, and your family member’s diagnosis of MND.
How will we use information about you?
We will need to use information from you for this research project. This information will include your anonymized data. People will use this information to do the research or to check your records to make sure that the research is being done properly. We will keep all information about you safe and secure. Once we have finished the study, we will keep some of the data so we can check the results. Since all individuals are participating anonymously no-one will be able to work out that you took part in the study.
Anonymized research data may be shared between other members of the department, and UEA collaborators, and with researchers undertaking other ethically approved research including national and international collaborations, who all adhere to relevant data protection legislation and confidentiality
What are your choices about how your information is used?
You can choose to stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.
Will this study benefit me?
We cannot guarantee that the study will be of direct benefit to you, although you may experience some indirect positive effects, such as knowing that you are helping researchers learn more about everyday experiences of carers, which may improve the wellbeing of others, now or in the future.
Some of the questions may be of sensitive nature and it is possible that these questions may bring up upsetting or distressing emotions. If any questions do this for you, we ask that you please contact your GP for support. If you are feeling distress while completing the questionnaires, you can stop taking part in the study at any time and contact your GP.
Who will be able to access or see my data?
All results and documents associated with this research are strictly confidential and stored securely in compliance with the Data Protection Act (2018) and the General Data Protection Regulation (GDPR). All data will remain anonymous.
What if I have a complaint, or if something goes wrong?
In the unlikely event of anything problematic happening, you may complain directly to the Dean of the School of Health Sciences: Sally Hardy, S.Hardy@uea.ac.uk.
Where can you find out more about how your information is used?
You can find out more about how we use your information
- At www.hra.nhs.uk/information-about-patients/
- Our leaflet available from University of East Anglia
- By asking one of the research team (see emails below)
If you would like more information, or need to contact our research team after taking part, please contact us at:
Ana Paula Trucco (PhD Student)
Queens Building
School of Health Sciences
University of East Anglia
Norwich NR4 7TJ
Phone: +44 (0)7825863389
Email: mnd.research@uea.ac.uk
Prof Eneida Mioshi (Chief Investigator)
Queens Building
School of Health Sciences
University of East Anglia
Norwich NR4 7TJ
Email: mnd.research@uea.ac.uk