European ALS / MND Palliative Care survey

This research is being undertaken with the support of the European Association for Palliative Care Reference Group on Neurology and the European Academy of Neurology Palliative Care Scientific Panel and is led by Professor David Oliver, who is the Chair of the EAPC Reference Group on Palliative care and neurology and a member of the Management Group of the EAN Palliative Care Scientific Panel. He is an Honorary Professor based within the Tizard Centre at the University of Kent, Canterbury.
We would like you to take part in this survey. Before you decide, please take time to read the below information and feel free to discuss with others.
What is the purpose of the study?
The aim of this study is to understand more about the collaboration between palliative care and neurology in the care of patients with ALS / MND and neurological disease across Europe.
Who is being asked to take part in this study?
We are asking all members of the EAPC Reference Group on Neurology, the EAN  Palliative Care Scientific Panel and members of organisations associated with the European Association for Palliative Care .

Do I have to take part?
No. It is your choice. If you decide to take part, you are free to change your mind or withdraw at any time. You will not need to give a reason.
What are you asking me to do?
We would like you to complete an online survey to provide information on areas of your work, the members of the team, the presence / absence of collaboration, attitudes to palliative care and neurology, and to future developments. There will also be free text areas where you may provide further details. All information will be collected anonymously.

What are the possible benefits?
The information gained will allow further discussion and development of services for people with ALS / MND and neurological disease and will help in the development of further guidelines, documents and educational activities.

What are the possible disadvantages?
The survey will take a short time to complete (10-15 minutes), but it has been kept as easy as possible.
Will taking part in the study be confidential?
Yes. This study will comply with the General Data Protection Regulation 2016/679. All data will be kept confidential and will not be passed on to anyone else outside of the research team.

Your data will be stored on a password-protected university network. The results of the study may be used within the EAN and EAPC to help develop the collaboration between neurology and palliative care, to inform an article for publication in an academic journal and provide the foundation for more research in this area. To ensure confidentiality, where data is used in publications, all data will be anonymised so that no one who participated in the study can be identified. 
You may give your contact details at the end of the survey, if you wish to receive a summary of the results or if it would be agreeable for the research team to contact you for further information. These details will be kept separately from the survey responses to retain anonymity.
Who has reviewed this study?
The Tizard Centre Research Ethics Committee at the University of Kent, where Professor Oliver is a member of faculty, reviewed this study and gave permission for this information sheet to be given out to professional carers. This does not mean that you have to take part; it is completely your choice.
Contact details
Project lead:
Professor David Oliver
Tizard Centre
University of Kent
Canterbury CT2 2NF
Tel: +44 (0) 1227 827373
Further information
If you have a complaint or any concerns about this research please contact: The Secretary of the Ethics Committee (Liz Lukehurst), Tizard Centre, Cornwallis North East, University of Kent, Canterbury, CT2 7NF.
Tel: +44 (0) 1227 827955

By starting the survey you will be deemed to have given consent.