We need your help
The MiND Study aims to lead to a routinely available blood test, to help GPs and other specialists diagnose the cause of cognitive, psychiatric, and neurological symptoms and illnesses, quickly and accurately. Our early findings are very promising, that a simple blood test that can be done close to home, could reduce the delay, misdiagnosis, multiple assessments, uncertainty and stress, faced by so many people with these symptoms. We need your help to show that this works in larger numbers of people, to lead to a test that could dramatically improve care for people in the future, their families, and healthcare systems.
If you have cognitive, psychiatric, and/or neurological symptoms, are happy to have a blood test close to home, and are interested in participating, please discuss a referral with your GP, treating specialist, or other healthcare professional. Alternatively, please contact us.
We are also recruiting people who don’t have any symptoms or diagnoses of cognitive, psychiatric and/or neurological diseases. If you are keen to participate as a ‘control’, please discuss a referral your GP or other healthcare professional, or, contact us.
If you’re keen to join our community and to receive updates and information on the MiND Study, please contact us to get on our newsletter list.
Am I eligible to participate in the MiND Study?
We are looking for people with symptoms, as well as people without symptoms, or ‘controls’.
You could be eligible if you are:
- Aged 40 to 80 years (<40 or >80 on a case-by-case basis)
- You, your family, or your doctor have noticed cognitive or psychiatric symptoms that are new or recent (within the last 5 years)
- Examples of cognitive symptoms (or problems with thinking): problems with memory, problem-solving, finding words, or changes in personality or behaviour,
- Examples of psychiatric symptoms: changes in mood such as depression or mania, psychotic symptoms such as delusions or hallucinations
- If you have a long history of a psychiatric illness/diagnosis, you may still be eligible if there have been recent changes in your symptoms or treatment needs
- ‘Control’: age 18+, no current cognitive, psychiatric or neurological symptoms, illnesses or diagnoses
We are also recruiting people for the following sub-studies:
- People <40 or >80 considered on a case-by-case basis (e.g., people >80 referred to or considering referring to a CDAMS/memory clinic, people <40 and a suspicion of neurological/neurodegenerative cause for symptoms)
- Diagnosed or suspected CJD
- Diagnosed or suspected functional neurological disorders (including functional cognitive disorders, psychogenic non-epileptic seizures)
- People with Niemann-Pick Type C, their parents and siblings
- People with a known genetic cause for neurodegenerative disorders, who are presymptomatic (e.g. C9orf72, MAPT, PSEN1)
- RMH Neuropsychiatry patients with Huntington disease, with a) CAG repeat number, b) UHDRS, c) MRI brain within 6 months, d) NUCOG but ideally neuropsychology within 6 months
- People with diagnosed or suspected behavioural variant frontotemporal dementia, or, non-progressive bvFTD / bvFTD ‘phenocopy’, of any age and duration of symptoms
What is the MiND Study?
The Markers in Neuropsychiatric Disorders (MiND) Study is studying whether a simple blood test can improve accurate diagnosis and reduce the delay, for people with cognitive, psychiatric or neurological symptoms.
A wide range of illnesses can cause these kinds of symptoms of the mind and brain, the most complicated part of our body, such as primary psychiatric illnesses, dementia, and other neurological illnesses. Sometimes nerve cells can be damaged, causing a protein called neurofilament light (NfL) to be released into blood, where we can measure it. The level of NfL in the blood can be a “biomarker”, that can help tell us what kind of illness is going on.
If a GP and other medical specialists (such as psychiatrists, neurologists, and geriatricians) could order a simple blood test for NfL, this could reduce the delay to correct diagnosis, reduce the need for additional assessments and investigations, and ultimately improve the assessment, care and treatment for people with cognitive, psychiatric and neurological symptoms, and their families.
Why are we conducting this Study?
There is often a significant delay to accurate diagnosis and treatment for people with cognitive, psychiatric or neurological symptoms. People go through many years of seeing multiple specialists, uncertainty, getting misdiagnosed, having lots of blood tests and scans. For many people, even after many years, there can still be uncertainty. Misdiagnosis and delay to diagnosis are often worse for people with younger-onset dementia (symptoms starting before age 65), who can have a wide range of different early symptoms, and because doctors are less likely to suspect a dementia in younger people. Our own early studies (such as Eratne et al, ANZJP, 2020) have shown that there is great promise for a blood test for NfL, as a screening test to significantly improve the situation and reduce stress and negative impacts for patients, their families and clinicians, and healthcare systems. We need your help to achieve our ultimate aim: to lead to a simple, routinely available blood test for GPs and other medical specialists, to help transform the care of all people with symptoms and illnesses of the mind and brain.
What do I need to do for the Study?
We want to make taking part in the Study as simple and convenient as possible. To make it as convenient as possible for you, you can complete all Study requirements via telephone/telehealth/online, and blood sample collection can be at a community collection centre close to you. All your information and samples will be kept strictly confidential, stored securely, and only used for research purposes.
The requirements for participants are minimal:
- Providing a blood sample, similar to a standard blood test, that can be done close to home, that should take less than 15 minutes.
- This sample will be analysed for NfL. Leftover samples will be stored for future research. This is because more and more new research tests or “biomarkers” will continue to become available in the future, that we would like to study to see if they could also help improve diagnosis and assessment
- Permission for the Study to collect relevant information from your treating doctors
- This information is crucial, as it will allow us to properly understand what your NfL level means
- Optional: provide another blood sample 1-2 years later
- Although this is optional, it would be ideal to help us know what happens to NfL levels over time
- Optional: complete some optional, basic questionnaires
- Although this is optional, it would be ideal to help us to know how to get this test funded by the government, and to have as much detailed information as possible to properly know what NfL levels mean
Here’s another way of showing what it means to take part in the MiND Study:
Who are we?
The MiND Study Group, based at the Royal Melbourne Hospital (RMH) in Parkville, Melbourne is led by Professor Dennis Velakoulis, Director of Neuropsychiatry at the RMH, and Clinical Director of the Melbourne Neuropsychiatry Centre (RMH and University of Melbourne) and Dr Dhamidhu Eratne, Neuropsychiatrist, Clinical/Research Fellow and PhD student at Neuropsychiatry RMH, and the University of Melbourne.
The core MiND Study Group based at Neuropsychiatry RMH, consists of senior clinical and research neuropsychiatrists, neuropsychologists, and experienced research assistants with expertise in conditions causing symptoms of the brain and mind. The larger Study Group involves collaborations with many key national and international organisations with the knowledge and expertise required for the Study’s success, such as (to name a few): Walter and Eliza Hall Institute of Medical Research (WEHI), the Florey Institute of Neuroscience and Mental Health, and Lund and Gothenburg Universities in Sweden.
What are the benefits of taking part in this Study?
Although participation in this Study is unlikely to benefit you directly, you will be making an invaluable contribution to research of dementia, and other neurological and psychiatric disorders, and the possibility of a simple blood test that could transform care for people in the future. There is no way to know if a blood test for NfL leads to benefits for people and healthcare system, and argue for it to be a funded test, without conducting clinical research, such as the MiND Study. That’s why we need your help.
What are the possible risks?
We do not anticipate any severe risks, side effects or discomforts. There can be small discomfort and very small but not severe risks associated with having a simple blood test. Participation in any research study can cause some distress. Our Study staff all have research and clinical expertise in picking up on any distress, and supporting you and giving you options for further support. We will discuss potential risks with you in more detail when going through the detailed information and consent form.
Will my information be kept confidential?
Your privacy will be protected at all times. All your information and samples will be stored securely on password-protected computers at the Royal Melbourne Hospital and secure biobanks, will be kept strictly confidential, and only used for ethically approved research purposes. No individual participant will be identified or linked to the results and only the research team will have access to your information. We can only disclose information with your permission, or as required by law. In accordance with Australian and/or Victorian privacy and other relevant laws, you have the right to access and correct the information we collect and store. The results of the Study will be presented at conferences and published in scientific journals. Results will reflect the whole group of participants, not your individual results. You will not be identified in in any way.
Will participating in the Study cost me anything?
No. Participating in the Study is completely free. You will not be paid to participate either. We may reimburse for any reasonable travel, parking, meals and other expenses associated with the Study.
What if I change my mind later and don’t want to participate?
Participating in this study is completely voluntary and your decision. If you decide to take part in the Study, and later change your mind, you are free to withdraw at any time, for any reason, and without consequence. Participating, or withdrawing from the Study, does not affect your clinical care, or your current or future relationships with your treating clinicians that you may have with the Royal Melbourne Hospital and your treating clinicians.
Will I be informed of the results when the research project is finished?
You can request a summary of the research result (that reflect the whole group of participants, and will not identify you in any way) at the end of the five-year Study. We will also update this website with news and publications.
Who has funded and approved this Study?
The MiND Study is funded by Melbourne Academic Centre for Health (MACH), Australian Government National Health and Medical Research Council (NHMRC) grants, as well as philanthropic funding such as from the Creutzfeldt-Jakob disease Support Group Network (CJDSGN) Memorial Award in memory of Michael Luscombe. This research project has been ethically approved by the Human Research Ethics Committee of Melbourne Health (HREC number 2020.142).
Who can I talk to about the Study?
If you have any questions or would like any more information about the Study, we’d love to hear from you. If you’re interested in participating, please discuss a referral with your GP or treating specialist (you can tell them to visit www.themindstudy.org), or, please get in touch with us.
You can contact us via:
- The website contact form (click here)
- Email: firstname.lastname@example.org
- Phone: +61 3 9342 8750
- Fax: +61 3 9342 8483
If you have any concerns or complaints about the conduct of this Study, which you do not wish to discuss with the research team, you should contact: Manager, Human Research Ethics, Melbourne Health VIC 3050; Tel: +61 3 9342 8530; email: email@example.com. All complaints and feedback will be treated confidentially.