StepUp for Dementia Research connects people who want to participate in dementia-related research with researchers looking to recruit participants for their studies. Our software matches participants who have the relevant characteristics (age, diagnosis etc), with researchers looking for those characteristics in their study participants.
When registering as a volunteer, you will be asked simple questions about yourself or the person you are registering. This includes address, date of birth, and a brief medical history. Once you have registered, you can revisit your record and add extra information at any time – this improves your chance of matching to studies. For example, you can list any medications you take or update symptoms.
Registration takes 5-15 minutes. It does not commit you to taking part in research. It is simply an indication that you might be interested in doing so in future. The time involved depends on whether you are registering for yourself or someone else. If you’re registering as a person living with dementia, we have a few extra questions for you. You can register online or you can call our helpline at 1800 – STEP – 123, and our friendly and supportive helpline staff can answer any questions as well as helping to register you over the telephone.
After completing registration, you will receive general StepUp for Dementia Research information, including an information booklet with details on how to update your information (including removing yourself from the service) and what will happen next.
When researchers register their studies, they define the kind of people they’re looking for and the StepUp for Dementia Research system matches that description to the information provided registered volunteers.
If you, as a registered volunteer, match to a study, researchers from that study will be able to see all the information you submitted into the website. If you do not match to their study, the researcher cannot see your information. They can use the information to see if you are likely to be suitable. They can then contact you via your indicated preferred method to explain the aims and methodologies of their study, what your participation will involve, and ask whether you would like to participate.
Sometimes StepUp for Dementia Research might not have all the information needed to provide a really accurate match. When this happens, the researcher might contact you to ask you to take a ‘pre-screening’ questionnaire to determine, for example, if you are left-handed or have had a specific health issue in the past few months. This extra information will help the researcher decide if you might be a match for study participation.