We have prepared some frequently asked questions (FAQs) in relation to participating in research at ParkC.
How many people have already participated?
So far, 150 people have participated in research at ParkC.
Why do you need even more people to participate in the study?
We are looking at a wide range of motor and non-motor symptoms associated with Parkinson’s. In order to accurately identify subtypes of Parkinson’s in Western Australia, we need to include as many people as possible in our study. Everybody with Parkinson’s is different and we want to make sure that we take your experiences into account.
I’d like to participate, but I don’t think I can concentrate for 2.5 hours. Can I still help out?
Absolutely. We encourage breaks during the testing session, we’re more than happy to make you a cup of coffee or tea and to go for a short walk. If you ever feel like having a break during your session, just let your assessor know and we can resume the session when you’re feeling refreshed.
How can I get to ParkC?
ParkC is located on ECU’s Joondalup Campus. For those that drive, Joondalup is easily accessible via the Hodges Drive exit off the Mitchell Freeway. We will send a map with directions out with your questionnaire pack. Some travel costs will be reimbursed following the session.
If you would prefer to take public transport, we are located near the Joondalup train station and a CAT bus service regularly travels between the train station and the ECU campus.
If you would like to be involved but you cannot drive or take the train, please contact us so that we can help arrange alternative transport. We would still love to have you participate.
I’m having trouble completing my questionnaires. I feel like I keep getting asked the same questions and I keep contradicting myself. Am I doing this wrong?
It is completely normal to feel that questionnaires ask the same questions in different ways. Most people feel that they are contradicting themselves when answering questionnaires that measure mood and personality, and that’s ok. The main thing to remember is not to think too long about any one question; if in doubt, go with the first response that pops into your head.
Why am I supposed to complete the questionnaires in an ‘ON’ time?
As well as motor symptom fluctuation when medication has worn off, there is some evidence that there are subtle mood, personality and cognitive changes during OFF times. We have chosen to complete the cognitive and motor testing during ‘ON’ times and in order to keep all our information consistent, it is important that the questionnaires are also completed during ON times.
What happens to the information you collect on me? Can I be sure that the answers I give remain private?
We have an ethical obligation to keep participant information private. We assign all participants with a unique code, which allows us to keep your name separate from your questionnaires and cognition test data. All information is kept in locked filing cabinets at the ParkC office and computer information is stored separately from any identifying information. Only ParkC staff and students have access to this information and we never identify participants without their prior specific consent.
What’s all this about giving blood?
You may have seen that ParkC will be collecting blood in order to determine whether genetic markers of Parkinson’s are present. If you choose to participate in the cognition study, you are not obligated to provide a blood sample now or in the future. If, at a later date, you choose to give a blood sample, the sample and analysis will be kept de-identified in a secure system.