We would like to invite you to take part in an online survey to find out about your experience of turning and falls. Before you decide if you would like to take part, you need to understand what the survey will involve. Please take your time to read the following information carefully and discuss it with others if you wish. Please ask if there is anything that is not clear or if you would like more information. Take time to decide if you wish to take part. Thank you for reading this information.

What is the purpose of the study?
The study aims to collect information from online surveys to help us to understand more about turning problems for people with Parkinson’s. We know that people with Parkinson's often experience problems with their turning which can sometimes lead to falls. We will use the information from this survey to help us design an intervention to help treat turning problems in Parkinson’s which we will test in a future research study. In this survey, we will ask you about your experience of turning problems and falls.

Why am I being invited to take part?
You have been invited because:
1) You are a person that has been diagnosed with Parkinson's
or
2) You are a carer for someone living with Parkinsonʼs 

Do I have to take part?
No, it is up to you to decide whether or not to take part. You are free to withdraw anyime up to undertaking the survey. However, once data is collected from you it will be anonymised and therefore, we will be unable to discount your contribution. A decision to withdraw, or a decision not to take part, will not affect you in anyway.

What would I be asked to do if I chose to take part?
You will take part in one online survey. We will collect details including age, gender, length of time you or the person you care for has been living with Parkinson’s and medication history. The survey will focus on your experience of falls and turning problems. Completing the survey online will be taken as consent. We expect the survey to take approximately 10 minutes to complete. If you are unable to complete the survey online, you can contact Julia Das via email or phone, and she will set up a time to go through the survey with you on the telephone.

What are the possible disadvantages, or risks, of taking part?
There are no significant risks in taking part in this online survey. You will be asked to think about your experience of turning difficulties and falls which may be upsetting for some people. However, you do not have to answer any questions that you are not comfortable with.

Parkinson’s UK helpline can provide information and advice about all aspects of living with Parkinson’s, for example medical issues of symptoms and treatment and emotional support from trained advisors including specialist Parkinson’s nurses. The helpline number is 0808 800 0303 and is open 0900-1800 Monday-Friday and 1000-1400 Saturday.

What are the possible benefits to taking part?
There are no direct benefits to taking part in this online survey. Information from this survey will be used to help design an intervention to help people with turning problems in the future.

What would happen to the information collected about me?
Any personal information that could identify you (e.g. email addresses, postal addresses), collected for the purpose of sending out information, will not be shared with anyone who does not need them to conduct the study. Personal information will be stored on Northumbria University secure servers until the end of the study (4 months) before being deleted, unless you have consented to us keeping this for longer. Your name, and any other personal information that could potentially identify you, will not appear in any reports or publications.

What will happen to the information collected during the study?
The general findings of the survey might be reported in a scientific journal or presented at a research conference, however the data will be anonymized and you or the data you have provided will not be personally identifiable. The process of the survey and findings may also be shared with other organisations/institutions that have been involved with the study.

What would happen if I started, but changed my mind?
Should you choose to participate, you retain the right to withdraw at any stage before or during the survey without providing a reason. Your decision to not participate or to withdraw from the survey will not result in any adverse repercussions for you. However, please note that once the online survey is completed and submitted it will not be possible to remove individual responses and the data cannot be withdrawn.

Will my taking part in the study be kept confidential?
Yes. We will follow legal and ethical practice and handle all information about you in confidence. Information about you that is collected as part of the study will be identified by a unique study number to maintain confidentiality. The anonymised data may be used for other projects. We may share anonymous information with other researchers. This is encouraged to optimise the use of good quality research data.

How will my data be stored, and how long will it be stored for?
All survey responses will be stored on the University OneDrive, which is password protected. All data will be stored in accordance with Northumbria University guidelines and the Data Protection Act (2018).

What categories of personal data will be collected and processed in this study?
We will collect your age, gender and the length of time you or the person you care for has been living with Parkinson’s.

What is the legal basis for processing personal data?
Processing is necessary for the performance of a task carried out in the public interest.

Who are the recipients or categories of recipients of personal data, if any?
The research team at Northumbria University will have access to personal data.

Where can I find out more about how your information is used?
You can find out more about how we use your information  by asking Dr Rosie Morris (rosie.e.morris@northumbria.ac.uk) or by sending an email to Duncan James (Data Protection Officer, University of Northumbria at Newcastle) at duncan.james@northumbria.ac.uk.

What are my rights as a participant in this study?
A right of access to a copy of the information comprised in your personal data (to do so individuals should submit a Subject Access Request Subject Access Request); a right in certain circumstances to have inaccurate personal data rectified; and a right to object to decisions being taken by automated means. If you are dissatisfied with the University’s processing of personal data, you have the right to complain to the Information Commissioner’s Office. For more information see the ICO website the ICO website.

Who has reviewed the study?
This study has been approved by Northumbria University ethics ref:10419.

Who is organising and funding the study?
Northumbia University is organising the study. The study is funded by the National Institute for Health and Care Research.

How do I take part in the study? 
Please email Dr Rosie Morris or Dr Julia Das using the contact details below or click the link on the survey advert.

Who can I contact for further information about the study?
Dr Rosie Morris, Chief Investigator: rosie.e.morris@northumbria.ac.uk. Telephone: 0191 215 6038
Dr Julia Das, Research Fellow: julia.das@northumbria.ac.uk. Telephone: 0191 215 6287.

If you have any concerns about the study and would like to talk to someone at Northumbria University who knows about, but is not involved in the study, please contact: Dr Gill Barry, Email: gill.barry@northumbria.ac.uk. Telephone: 0191 227 7635.