StepUp for Dementia Research is a research participation and engagement service, a “one-stop shop” that connects individuals with researchers conducting dementia research studies. StepUp for Dementia Research is part of StepUp for Research which supports two streams of research, dementia and ageing. A separate website, called StepUp for Ageing Research, supports ageing related research.
StepUp for Dementia Research is a matching service which allows people to register their interest in dementia research, so that they can be contacted about relevant research studies. The aims are to make study recruitment more efficient and improve volunteer access to research participation opportunities.
StepUp for Dementia Research aims to sign up thousands of volunteers who want to be involved in dementia research. The service helps researchers to improve study recruitment.
Please submit your Research user account registration form via here.
Your organisation will need to sign a Data Access Agreement (DAA) with the University of Sydney and each Chief Investigator (CI) must acknowledge the Account User and Confidentiality Terms. The StepUp for Dementia Research administration will contact you to discuss this after you have submitted your registration.
By submitting the registration form, Research Users consent to the collection and use of personal information for:
Once you login to StepUp for Dementia Research with your research user account, you will be able to submit a study registration form. StepUp for Dementia Research administration will contact you to arrange for your user training online, face-to-face or via web video. Training sessions are run each month. Recruitment for your studies can only commence upon completion of training.
When a study is approved and created to the system by StepUp for Dementia Research administration, ‘matching criteria’ are set based on factors such as diagnosis, location, clinical information, or age, according to your selection criteria. Our algorithm will then identify a list of potential volunteers, and you will be able to see their contact details, geographical area and any medical information they have entered.
To use StepUp for Dementia Research you will need to ensure that your study has the appropriate ethics approval from a Human Research Ethics Committee (HREC). If you have not yet applied for ethics approval, you will need to state that you will be recruiting volunteers through StepUp for Dementia Research on your application. StepUp for Dementia Research provides wording for your study to use. If you have already obtained ethics approval, you will need to submit an amendment to your HREC to explain that you will use StepUp for Dementia Research for recruitment.
Yes. Access to StepUp for Dementia Research is strictly controlled and limited to authorised researchers. As part of your training, StepUp for Dementia Research will explain the rules and procedures and provide you with access to all appropriate usage protocols. You will be expected to follow these protocols at all times.
This depends on factors such as when the next researcher training session is held, and whether a DAA has already been signed with your organisation. You should normally expect this process to take two to eight weeks.
The CI will need to provide the study’s ethics application and approval letter, as well as the volunteer information sheet (aka. Participant Information Statement) and study protocol. Further, a lay summary of the study will need to be provided, according to StepUp for Dementia Research Lay Summary Guidance.
Yes, StepUp for Dementia Research runs a short news item on every study added to the system. This helps encourage new volunteers who might be particularly interested in your research. Our communications team will contact you to discuss what information will be needed.
Yes. You can recruit for as many studies as you are involved in, as long as the studies are approved on StepUp for Dementia Research and assigned to those studies within StepUp for Dementia Research.
When a study is entered on StepUp for Dementia Research, matching criteria are set based on the study’s selection criteria such as diagnosis, location, clinical information, age, and so on.
After the matching algorithm has run, authorised research users on that study will see a list of matched potential volunteers. This will include the volunteers’ preferred contact details, geographical area and medical information such as diagnosis and medication that the volunteer has entered. You will also be able to see whether a volunteer is currently involved in another study.
Some of the information provided by volunteers will be used for matching, some to help you screen and some to help you contact them and understand their preferences. If you are interested in knowing the information requested in the volunteer registration, you could sign yourself up as a volunteer. (Please see section Can I sign up to StepUp for Dementia Research as a volunteer?)
Yes, your study information can be changed. To do this please contact StepUp for Dementia Research at firstname.lastname@example.org.
Yes, once your study is on StepUp for Dementia Research, volunteers who match your study criteria will be able to see some information about the study. This information includes the organisation and researchers running the study and a lay summary. The local site contact details or local researchers on the study will not be seen.
It is possible that the volunteers entered incorrect personal or health information. If you found that the volunteer information is out-of-date, please ask them to update their profile or inform StepUp admin.
Please also note that the recruitment area is defined by postcodes which can be across state/territory or local council boundaries. For example, a volunteer whose residence falls under the postcode 4380 can be matched to studies looking for volunteers in NSW as well as studies looking for volunteers in QLD. Also, a volunteer whose residence falls under the postcode 2193 can be matched to studies looking for volunteers in Ashfield, Canterbury and Marrickville. In such cases, volunteers from a different state/area may be matched to your study, due to the overlapping of postcodes. It is up to you to further discuss with the volunteer about their eligibility and enrolment for your study.
Yes. We encourage researchers to sign up as volunteers. If you would like to do this, please visit the volunteer sign up page; however please note that you cannot register using the same email address you use for your researcher account.
We encourage everyone who recruits volunteers from StepUp for Dementia Research to play a role in promoting the service and encouraging others to register. You can do this in many ways, e.g., by contributing to news stories, tweeting, and telling your colleagues, patients, family and friends. We will include a news item on every new study that is added to StepUp for Dementia Research. We encourage you to send a short film/story introducing yourself and your study, where possible.
You can also refer your participants to StepUp for Dementia Research. Please feel free to download and print out materials.
Researchers recruiting volunteers via StepUp for Dementia Research are asked to acknowledge the service for the support provided in their publications as follows: “StepUp for Dementia Research is funded by the Australian Government Department of Health and implemented by a dedicated team at the University of Sydney.” by citing the StepUp’s published paper: Jeon, Y.H., Shin, M., Smith, A., Beattie, E., Brodaty, H., Frost, D., Hobbs, A., Kotting, P., Petrie, G., Rossor, M. and Thompson, J., 2021. Early implementation and evaluation of StepUp for dementia research: an Australia-wide dementia research participation and public engagement platform. International journal of environmental research and public health, 18(21), p.11353. https://www.mdpi.com/1660-4601/18/21/11353.
Providing a good experience and service is important. StepUp for Dementia Research may contact you periodically to ask for your opinion, experience and feedback. StepUp for Dementia Research may email you polls or surveys about your experience; participation in these is confidential and voluntary; and the results will only be shared in a de-identified manner.
Yes. You do not need to have a separate account for StepUp for Ageing Research. If your study is about ageing or aged care related and have obtained the ethics approval, you can use StepUp for Ageing Research for your study recruitment. If you already have completed the StepUp for Research training, you do not need to attend another training session.
Organisational Data Access Agreement is a one-off document. If the Chief Investigator of your study is from the above organisations, you do not need to submit the Data Access Agreement.