Trials

 
 

ADAPT for Dementia Research Project - Community Notification

Dear Attendees at the Eastern Cognitive Disorders Clinic,

We are conducting a research project called ADAPT for Dementia to improve the early diagnosis of cognitive problems and dementia. Here's what you need to know:

What does ADAPT for Dementia stand for?

Artificial intelligence for Diagnostic Augmentation of PhenoTyping for Dementia

What is the project about?

We want to explore whether new computer technology called artificial intelligence (AI) can help doctors diagnose dementia earlier and more accurately. We use information from people seen in our clinic in the past without revealing their identity. That is, we use things like age, memory test results and your diagnosis if you have one, but not things like your name, date of birth or address. We use the term de-identified to refer to this.

Does this affect you?

We will use de-identified data from attendees to our clinic prior to 30 September 2024.

Will this affect my care?

No. This is a proof-of-concept research project only. It will not be implemented or used on any existing or new patients seen in clinic. It will not impact the care of any patient (current or past) in any way.

Is my information safe?

Yes. We have strict security measures in place to protect your privacy:

  • Only de-identified data will be used in the research project

  • Only approved researchers will have access to the de-identified data

  • All data will be stored locally on secure hospital and university servers

  • Your data will NOT be uploaded to ChatGPT, other public AI services, or any public database

Do I have to participate?

No. Your participation is voluntary. If you do not want your de-identified data used in this study, you can opt out at any time.

How do I opt out?

To opt out, please contact Dr. Maja Christensen at maja.christensen@monash.edu. Simply state that you wish to opt out of the ADAPT for Dementia project.

Questions?

If you have any questions about the project, please contact Dr. Maja Christensen via email.

Thank you for your consideration.

Dr Maja Christensen

Principal Investigator, ADAPT for Dementia Research Project

Email: Dr Maja Christensen

 

A Phase 2b randomised controlled trial of sodium selenate as a disease modifying treatment for probable behavioural variant fronto-temporal dementia

This study is investigating a new drug, sodium selenate, for the treatment of behavioural variant frontotemporal dementia (bvFTD). 

Up to 120 patients with bvFTD will be recruited into the study. Half of the patients will receive 52 weeks of treatment with sodium selenate and the other half a placebo (a sugar pill). The main outcome of the study will be the change in brain volume over 52 weeks, comparing the treatment group to the placebo group. Additional outcomes will look at the overall safety and tolerability of the treatment, the levels of tau (a protein involved in the development of bvFTD) in the cerebrospinal fluid, the rate of cognitive decline and changes in behavioural symptoms observed in patients over the 52 weeks of treatment. 

The study has sites in Melbourne and Sydney. For further information please email selenate@alfred.org.au

MRI scan highlighting change in brain volume over 12 months

MRI scan highlighting change in brain volume over 12 months

Researchers from The University of Melbourne are conducting a study to test a mobile application designed for people with younger-onset dementia (YOD).

We are currently looking for:

• People living with dementia who had an onset of the symptoms before the age of 65

• With access to a smartphone or tablet

• With access to a computer with a camera and internet connection (As there will be two brief cognitive assessments via Zoom)

• With a support person

• Willing to use a mobile app for 15-20 minutes twice a week, for a total of 4 weeks

If you are a person with YOD or caring for a person with YOD and would like to receive more information about the study, please feel free to contact Julieta Sabates on sabatesj@student.unimelb.edu.au or A/Prof Alex Bahar-Fuchs on alex.bahar@student.unimelb.edu.au, or to write down your email address on this link https://www.surveymonkey.com/r/KXH7R29 and we will contact you shortly.

 

Calling all FTD families!

There are 2 studies in Australia looking at family members of people with FTD. One is an observational study, DINAD, where people related to a loved one with FTD and a strong family history are followed over time. The other is a drug study in people with a known genetic mutation in the granulin gene (GRN).

DNA contains genes important in FTD

 

DINAD

DNA contains genes important in FTD

The DINAD study is led by Prof Glenda Halliday at the University of Sydney. Prof Brodtmann is leading the Melbourne arm of the study with her team at ECDC and the Florey. People with a blood-relative with FTD and a strong family history (e.g., 3 or more relatives in your extended family with a diagnosis of FTD or a related brain condition such as motor neuron disease, MND) are eligible.

You do not need to know the gene your relative had, and you will not be told of your genetic status while in the study, although this may be available to you at the study end. You will need to have brain scans and cognitive tests on 3 occasions over 3-5 years. Contact Dr Deena Ebaid Dr Deena Ebaid if you live in Victoria, or Shani Lauf Shani Lauf for Sydney and NSW participation.

AL001 for ASYMPTOMATIC carriers of the GRN mutation

Neuronal network image

In an Australian first, people who have a known GRN mutation will be offered participation in a study to delay or prevent FTD symptom onset. Some people have had a loved one with FTD who had genetic testing and were confirmed to have the GRN mutation. They may have gone on to have genetic counselling and had genetic testing themselves to discover that they carry this gene. It is these people who are eligible for this ground-breaking study.

Please note: people with FTD and a GRN mutation are eligible for the symptomatic study (see under FTD trials).