Frontier FTD research clinic
About the clinic
The FRONTIER FTD Research Clinic is the largest specialist frontotemporal dementia (FTD) clinic in Australia. Since 2007, we have specialised in the diagnosis, prognosis, and care of people with FTD and related conditions. We work towards understanding the manifestations, causes and biological bases of these progressive brain disorders.
Our Services
We specialise in researching behaviour, cognition, social functioning, speech and language, clinical management, and many other aspects related to FTD and dementia more generally.
We work with individuals with FTD, Alzheimer's disease, and related brain conditions such as corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP).
We collaborate with carers and families to help inform diagnosis and obtain important information about participants' functioning and cognitive change. Importantly, we aim to assist carers through all stages of the FTD journey through education, psychosocial support, and referral to specialist services.
Participate in our research
If you have been diagnosed with frontotemporal dementia, you have an important role to play in our research. Here is what you need to get involved.
- A diagnosis of behavioural-variant FTD, semantic dementia, progressive non-fluent aphasia, logopenic progressive aphasia, corticobasal syndrome, progressive supranuclear palsy, or Alzheimer’s disease.
- Fluency in English
- Living at home
- Able to communicate and manage basic self-care
- Able to walk unaided
- No other major neurological or psychological disorders, such as major stroke, severe brain injury, schizophrenia or bipolar disorder.
We strongly recommend that you have a close family member or friend available to accompany you to the clinic, so that we can gather data from multiple perspectives.
If you, or someone you care for, meet these criteria and would like to participate in our research, ask your specialist (neurologist, geriatrician, or psychiatrist) to send us a referral at frontier@sydney.edu.au.
We are also always in need of healthy volunteers to aid us in our research. Participating with us as a volunteer typically involves the activities mentioned above. If you would like to volunteer, please email frontier@sydney.edu.au.
Research participation typically involves a two-day visit to the FRONTIER FTD Research Clinic. You will:
- Have a session with one of our specialist neurologists.
- Complete questionnaires about your medical history and family history.
- Complete tests of your memory, language, and other thinking skills.
- Have an MRI scan of your brain – this is a painless, non-invasive procedure that generates high quality images of your brain.
Caring for someone with frontotemporal dementia?
The FRONTIER FTD Research Clinic offers information, advice, and service recommendations to individuals living with dementia, their families and carers as part of the clinic visit. When you visit our clinic, we will provide tailored advice, and provide you with resources and recommendations specific to your needs and diagnosis.
We have developed several resources that are available on our website. These are aimed at educating people about the Frontotemporal dementia syndromes, practical advice for symptom management such as apathy, behaviour changes, and anhedonia, and advice on accessing formal support services.
The FRONTIER FTD Research Clinic also seeks to raise public awareness of Frontotemporal dementia and its impacts on the individual, their carers and families. We endeavour to give back to our research participants and the general community by hosting annual family information seminars which can be viewed here.
Currently Recruiting Trials
In collaboration with A/Prof Rebekah Ahmed at the Royal Prince Alfred Hospital in Sydney, the FRONTIER FTD Research Clinic is involved in pharmacological clinical trials.
Currently, we are recruiting participants with FTD caused by granulin mutations for the following trials:
- Phase 1/2 Clinical Trial of PR006 in Patients With Frontotemporal Dementia With Progranulin Mutations (FTD-GRN)
- A Phase 3 Study to Evaluate Efficacy and Safety of AL001 in Frontotemporal Dementia (INFRONT-3)
For more information on these trials can be found here or by emailing us frontier@sydney.edu.au
The FRONTIER Frontotemporal Dementia Clinic
FRONTIER is a collaborative, interdisciplinary research clinic in Sydney, Australia, that investigates frontotemporal dementia (FTD) and related disorders. FTD is Australia’s second most common degenerative disease in younger adults. FRONTIER is dedicated to identifying better ways to diagnose FTD and develop effective treatments for the condition.
Contact
Frontier clinic
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Level 1, Building G, Brain and Mind Centre, 100 Mallet Street, Camperdown, NSW, 2050