Presently, it is difficult for those living with dementia to participate in life-changing clinical trials. The University of Sydney, Australia, hopes to change this with their recently-launched StepUp for Dementia Research, an online resource with the hopes of seamlessly matching dementia patient/family with clinical sponsors and investigators.
At least in Australia there is presently no systematic way for those living with dementia to proactively participate in potentially life-changing clinical research. Moreover, the recruitment of dementia patients (e.g. Alzheimer’s studies, etc.) is time-consuming and expensive for clinical trial sponsors. Consequently, these studies are frequently delayed causing more frustration for all.
SetUp for Dementia Research
University of Sydney has established SetUp for Dementia Research as an engagement service to connects dementia patients and their families with relevant, matching clinical trials that can potentially help transform the lives of the patient.
Considered a “one-stop shop” connecting those individuals interested in dementia research with researchers conducting clinical research into dementia prevention, diagnosis, treatment, care and cure, the goal—a concierge service for the dementia patient and their family—is to connect them with the brightest minds in dementia research.
Initially to cover New South Wales and Western Australia, the service will go nationwide over the next year.
The University of Sydney designers sought to make this as easy as possible. They have developed software algorithms that match participants with relevant characteristics (age, diagnosis, etc.) with those researchers searching for study participants. The website includes Q&A and dementia resources for Australia as well as contact information.
Professor Yun-Hee Jeon leads the charge for SetUp for Dementia Research. A Susan and Isaac Wakil Professor of Healthy Aging at the University of Sydney, Dr. Jeon has lamented about the difficulties associated with dementia research in Australia—often involving significant delays as sponsors cannot find the right people to participate in clinical trials. Moreover, Dr. Jeon notes “The stigma around dementia means it can be hard to recruit participants, particularly those in the early stages who are likely to benefit most from our research but are often reluctant to talk about this symptoms or diagnosis.”
“Pedal to the Metal” in Dementia Research: A New Registry
Dementia research in Australia is a hot topic. Last year Dementia Australia announced the establishment of the Australian Dementia Network (ADNet), a registry and research program to accelerate dementia research in Australia. The Australian government agreed to allocate $18 million to build a comprehensive national registry of dementia patients. With a hope of harnessing big data, the goal will be to enable dementia researchers, clinicians, health service providers, industry and most importantly, dementia patients and their loved ones to collaborate for better care.
SetUp for Dementia Research Lead Researcher