Frequently Asked Questions
More information about being a ReCAPS participant
A: This study is being run by an experienced team of researchers from Monash University, University of Nottingham and University of Technology Sydney, along with partners at hospital sites in Victoria, New South Wales, the Australian Capital Territory, South Australia and Queensland. The principal investigator is Professor Dominique Cadilhac. The trial coordinators are Dr Jan Cameron, Ms Natalie Wilson and Ms Dawn Harris.
Find out about researchers involved in the ReCAPS trial here.
A: This study is being funded by a National Health and Medical Research Council (NHMRC) grant provided by the Australian Federal Government. Funding was also received from the Victorian Medical Research Acceleration Fund (Victorian Government) and from the School of Clinical Sciences at Monash Health (Monash University).
A: Contact the Monash University research team by email at email@example.com or by calling the office at 03 8572 2655. Alternatively, you can touch base with your hospital contact named on the patient information booklet given to you in hospital at any stage to ask more questions.
A: Participation in any research project is voluntary. You don’t have to participate if you don’t want to. You will still receive the best possible care to aid your stroke recovery.
A: You have the right to withdraw from the study at any stage, or you may wish to withdraw from only certain components of the study. At any stage, you may reply “stop” to messages received to indicate that you no longer wish to receive them. A researcher from Monash University will call you within 72 hours to confirm whether you wish to stop receiving certain messages, or withdraw from the study altogether. The researcher will ask if you would be happy for some of your data to be used in an anonymous way for the final analysis. This is completely voluntary and you have a right to refuse.
If you wish to withdraw at a later date, after the messaging has been completed, all you need to do is contact us on any of the following:
Phone: 03 8572 2655
Or using the Contact Us form
Your decision to withdraw will not affect your relationship with your healthcare providers or your routine treatment.
A: The messages will be sent across 12 weeks regarding your initial goals. You are free, however, to focus on any new goals you may have developed. The ‘My Stroke Journey’ information pack you were given before discharge from hospital has a section where you can write additional goals. Alternatively, you can use the enableme website to write some goals.
A: Yes, please let us know about any visit to the emergency department, or admission to hospital even if it has nothing to do with your stroke. You can do this by contacting us on any of the following:
Phone: 03 8572 2655
Or using the Contact Us form
A: The number and type of messages you receive will depend on the discharge support program you were assigned to at randomisation. The messages will be sent via SMS or email, according to the preferred method you chose. Some messages have hyperlinks where you can access additional information. Click on the hyperlink that begins with ‘bit.ly’ and it will take you to a webpage with further information. For example: “Hi Kate, for information about stroke and how to manage after stroke, visit bit.ly/2tjtyhE or call Strokeline on 1800 787 653”.
A: Once randomised, you can expect to receive your first message from ReCAPS within a few days. This will be sent by your preferred method (email or SMS). If you have chosen to receive messages as email and they do not come through, please check your spam/junk mailbox. If the messages are in found in your spam or junk mailbox, please move our message to your inbox and add ReCAPS as a contact. If you have any problems with this please call us so that we can help you.
If after 7 days you have not received our ‘Welcome message’, please contact the ReCAPS office on:
Phone: 03-8572 2655
A: By signing the consent form you agree to relevant research staff accessing your health records for personal information (e.g. date of birth, contact details) and health information.
Research staff will collect information on the health and community services you have used in the 12 months before your stroke and in the 12 months following your stroke. This information will be collected in two ways:
- from self-report and your medical records;
- from health data sets (such as Medicare, Pharmaceutical Benefits Scheme) held by the Australian Institute of Health and Welfare (AIHW). The information collected will be in a format that cannot personally identify you and will be used solely for the purposes of this project.
Individual data will not be published.
Your information will be stored securely. Data will be stored for at least 7 years after completion of the study, after which it will be securely disposed of according to Monash University policy.
Only ReCAPS investigators will have access to your health and survey data. Study data will be stored in a databank for use in future studies with complementary research questions. The data will be stored without personalised details that can identify individuals. Professor Cadilhac will be the custodian of the databank. We will never release your information to third-party businesses or organisations without your consent. If you have any further concerns or questions regarding how we will manage your data, please do not hesitate to contact the research team here.
A: No, participation in the study is free. However, there may be a cost incurred by you if you reply to any of our SMS messages (usually a standard cost charged by your telephone provider of approximately 50 cents). All of our follow-up assessments are completed over the phone or by video link, so no travel is required.
A: This study is a randomised controlled trial with blinding, which means it is important that you remain unaware of your group assignment while the study is occurring. This is to ensure that the results of the study are as scientifically valid as possible. At the conclusion of the study (i.e. at the 12 month timepoint), we will provide you with an opportunity to comment on your satisfaction with the study. At this time, if you wish to find out, we can let you know what group you were in.
A: If for some reason you believe you were sent a message by mistake, please contact our research office by clicking here.
A: The messages we develop undergo a rigorous development and testing process to ensure that the information we deliver is current and relevant. Some messages contain hyperlinks to external webpages. Whilst every effort is made to check that these hyperlinks are up-to-date, sometimes these links change, experience temporary down-time or become unpublished. If you experience a problem with a link in one of our messages, please report it by clicking here to help us to continue to deliver an exceptional patient-focussed discharge support service.
A: As part of the trial, we will complete an outcome assessment with you over the telephone around 3 and 12 months after discharge. In preparation for this phone call, we post out copies of the questionnaires to be asked over the phone. This is simply to provide you with sufficient time to consider your responses before we telephone you to administer the questionnaires. If you prefer a shorter phone call, you may complete and return the paper copies sent to you using the postage-paid envelope provided. If you prefer, you may also complete these surveys online, just let the team know and they will organise for them to be sent to you as an online survey.
A: The Australian Stroke Clinical Registry (AuSCR) is a national registry designed to monitor and promote improvements in the quality of care provided to patients with stroke. You may have received correspondence from the AuSCR if the hospital staff who treated you recognised you as eligible for inclusion in the registry. Participation in the registry is completely voluntary, and you may opt out at any time by contacting the AuSCR office. Usually, staff from the AuSCR will contact those who are participating in the registry at 90-180 days after discharge to enquire about their health and wellbeing post-stroke. Since we are collecting the same data for part of the ReCAPS trial, we can provide AuSCR with these data to avoid you being asked to complete similar questionnaires twice. With your permission, we will securely transmit only the required data needed by the Australian Stroke Clinical Registry.
A: Participation in any research project is voluntary. You don’t have to participate if you don’t want to. Your decision about whether or not to take part ReCAPS, or to take part and then withdraw, will not affect your routine treatment, your relationship with those treating you or your relationship with your hospital. You will still receive the best possible care to aid your stroke recovery.
A: We are only offering participation in this trial. However, if you would like to know about your eligibility to participate in future studies, please register here to indicate your interest.
A: We cannot guarantee or promise you will receive any benefits from this research. However, there may be some personal benefits to participating in the ReCAPS trial if it helps you to achieve your health recovery goals. There may be broader benefits if this study is shown to be effective and made available to more people with stroke in Australia and elsewhere.
A: The only inconvenience associated with this study will be the time taken to complete the assessments throughout the trial and setting some recovery goals. There are no known risks or anticipated discomfort from taking part in this study. However, if you do feel distressed at any point during the study, please let the research staff know using the contact details provided below. The staff can advise where you can seek help. If results from our assessments/questions suggest significant health difficulties, you will be notified in writing and advised to contact your general practitioner. Your doctor might consider it to be in your best interests to withdraw from the research project. If this happens, please inform us here
Phone: 03-8572 2655
All research in Australia involving humans is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this research project have been approved by the HREC of Monash Health (HREC/18/MonH/143).
This project will be carried out according to the National Statement on Ethical Conduct in Human Research (2007) Updated 2018. This statement has been developed to protect the interests of people who agree to participate in human research studies.