This National Science Week (15 – 23 August), we invite the community to participate in the ‘Deep Brain Stimulation (DBS) CURIOUS study’, run by The University of Melbourne.
Who is running this study?
This study is run by researchers at The University of Melbourne (Vascular Bionics Laboratory) led by Professor Nick Opie and team.
Every research request is carefully reviewed by the Fight Parkinson’s Research Committee to ensure projects meet the highest standards of scientific rigour and ethical approval.
What is this study about?
The ‘CURIOUS’ study aims to better understand what is important to people with Parkinson’s who are considering, currently receiving, or who have received DBS therapy, as well as their carers and loved ones.
The research team would like to understand:
- What matters most to people when thinking about DBS
- What questions or worries they have
- How DBS and similar treatments affect them and their families.
The main goal of this research is to gain scientific information. The research team in charge of the study cannot guarantee or promise that participants will receive any benefit from this research. However, the results arising from this research may indirectly help people living with Parkinson’s, and their carers or loved ones, in the future.
It may guide the development of DBS technology, including less invasive options. Click here to learn more about Deep Brain Stimulation or download the DBS Fact Sheet under ‘Related resources for you’ on this page.
Who can take part in this study?
You may be able to take part in this study if:
- You are 18 years or older, and
- You live with Parkinson’s (including Young Onset) or Atypical Parkinson’s (including PSP, MSA, or CBS), and
One of these applies:
- You are considering DBS, or
- You are currently receiving DBS, or
- You had DBS therapy in the past.
You will need to be able to give informed consent and take part in an interview by phone, online, or in person.
What will I be asked to do?
Participants will be invited to take part in one interview, which will last between 30 – 60 minutes. The interview will take place via telephone, secure online platform, face to face interview, or in a group setting, which would include between 3 – 5 people. It will be conducted by an interviewer following an interview guide. With your permission, which will come in the form of a signed consent form, the interview will be audio recorded on a Dictaphone.
You can expect questions to centre around the following topics:
- Your experience of movement disorders
- Your thoughts and feelings about DBS and similar treatments
- What is important to you in daily life.
Tell me more about the consent form
Should you agree to participate in this study, you will be asked to sign a consent form. By signing the consent form, you’re telling the research team that:
- You have understood what you have read
- You give permission to take part in the research project
- You give permission for the use of your personal and health information, which will be made anonymous
- You give permission for the research team to use the methods that have been described.
What will happen to any personal information or study results that is collected from me?
All information gathered from you will be anonymised by using unique participant numbers. The type of personal information collected may include:
- Your name and contact details – for purposes of arranging your interview
- Gender and age
- Medical diagnosis – type of movement disorder
- Status of DBS therapy – proposed, current, past.
Any information obtained in connection with this research project that can identify you will be anonymised. Any information on paper will be kept in locked cabinets at a secure University of Melbourne building. Electronic data, including recordings, will be kept in a password protected electronic database on an encrypted cloud server. Only researchers involved in this project can access this information.
The information and data collected for this research project will be confidentially destroyed five years after the last publication, in line with the University of Melbourne policy and procedures.
The information gathered will be analysed by professional researchers to answer the research question. Any formal reports or academic publications arising from this data would be made available to you at your request.
It is anticipated that the results of this project will be published and or presented in a variety of forums. It is also anticipated that the information gathered in this study may be used in future research or for secondary analysis or presentations on consumer needs related to device development.
A note on the possibility of data inspection
Any information obtained during this research project about you are subject to inspection (for the purpose of verifying the procedures on the data) by the relevant authorities and authorised representatives of the institution relevant to this participant information and the consent form or as required by law.
By signing the consent form, you authorise release of, or access to, this confidential information to the relevant study personnel and regulatory authorities as noted above.
In accordance with the relevant Australian and/or Victorian privacy and other relevant laws, you have the right to request access to your information collected and stored by the research team.
You also have the right to request that any information with which you disagree, be corrected. Please contact Christin Mathew if you would like to access your information.
Email: [email protected]
What are the possible risks?
The research team does not foresee any serious risks in this study.
During the initial information giving session, the researcher will look out for memory issues, which may mean that you will not be able to take part in the study.
A minor risk is fatigue. Should you feel tired, you are free to stop the interview at any point. You are free to withdraw from the interview all together if required.
Who can I contact if I have any concerns about the study?
This project has human research ethics approval from The University of Melbourne, Project ID: 34843
If you have any concerns or complaints about the conduct of this research project, which you do not wish to discuss with the research team, you can contact the Research Integrity Administrator, Office of Research Ethics and Integrity, University of Melbourne, VIC, 3010.
Phone: +61 3 8344 1376
Email: [email protected]
All complaints will be treated confidentially. In any correspondence, please provide the name of the research team and or the name or ethics ID number of the research project.
Important notes about this study
- Participation in this study is voluntary. If you begin participating, you can stop at any time. However, any data and information collected from you up to this point will be included in the study. If you do not wish for your data to be included, you can advise the researcher
- Participants will not be paid for their involvement but will receive a voucher as a thank you for their time. Reasonable travel costs will be re-imbursed for in-person attendance
- It is important that participants do not experience any issues with their memory, so you can recall events that may be important during the interview
- If you do not wish to continue the interview before completion, you may indicate your wishes to the researcher and the interview will be stopped. The study can be terminated at any time at your convenience for any reason Your name will not be used in any publications produced from this study
- The conduct of this study may lead to discoveries that may be of commercial value to the company developing the new DBS device. There will be no financial benefit to you or your family from these discoveries
- No member of the research team will receive a personal benefit from your involvement in this research project, other than ordinary wages.
Who do I contact if I’d like to participate in this study?
If you would like more information on, or would like to participate in the ‘DBS CURIOUS study’, please contact Christin Mathew who is a researcher on the team.
Email: [email protected]
