The MiND Study is exploring blood biomarkers to improve early and timely diagnosis for people with cognitive, psychiatric and neurological symptoms.
We need your help to recruit enough participants from a range of settings. So, please ‘Keep MiND in MiND’ if you have a patient with cognitive, psychiatric and/or neurological symptoms (and controls). Please read the information on current recruitment criteria (below), and click the button (also below), to complete the secure 1-2 minute REDCap referral form.
The ultimate aim of our Study is clinical translation: the availability of a simple, routinely available blood test to improve outcomes for patients, their families, their treating clinicians, and healthcare systems.
The MiND Study Group are particularly interested in a blood test for neurofilament light (NfL), that can quickly and accurately distinguish neurodegenerative or neurological disorders, from non-neurodegenerative and primary psychiatric disorders. This is a common, often challenging diagnostic dilemma, faced by clinicians of wide backgrounds, and their patients, and contributes to the “diagnostic odyssey”: frequently over 3+ years of diagnostic uncertainty and delay, misdiagnosis, repeated and costly assessments and investigations, inappropriate treatment, and negative outcomes.
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.
Your time, help and support for our research and the potential benefits for people in the future, is much appreciated. We hope that our research can one day lead to a routinely available blood test that can help clinicians like you, for the patients you see. In addition, the MiND Study aims to support collaborations and data sharing to support a range of biomarker and other studies, would appropriately acknowledge significant referrers or invite to co-author for presentations and manuscripts, would be keen to hear of opportunities and ideas to deliver educational and other information sessions and workshops, we hope to have sub-studies where NfL levels are fed back to referring clinicians to explore the clinical utility further, and finally, there is the promise of MiND merchandise such as MiND punny mugs, for referrers!
If you have any questions or would like more information, or are interested in joining our community and receive updates via our newsletter, please contact us.
Thank you very much for considering your patient for the MiND Study. This secure REDCap referral form will only take a few minutes. Please click here if you’d like to view and download the PICFs and other materials (clinician and patient facing flyers (www.themindstudy.org/picf), and please feel free to share with people when you refer them. If you and your patient are prepared to complete the e-consent form, click here. If you have any questions, or to send additional information, or for any feedback, please do not hesitate to contact Dr Dhamidhu Eratne via deratne@unimelb.edu.au
We’re currently recruiting for the following studies:
A. Main study, people with symptoms, and controls, focusing on possible dementia:
People with symptoms
1. Aged 40-80 (people <40 or >80 will be considered on a case-by-case basis)
AND
2A. New/recent (within 5 years) cognitive symptoms (e.g. changes in memory, language, visuospatial and executive functions, personality/behaviour change), with or without psychiatric symptoms or history of psychiatric illness;
OR
2B. New/recent (within 5 years) psychiatric symptoms of depression, mania and/or psychosis, with or without cognitive symptoms;
OR
2C. If longstanding/pre-existing psychiatric disorder, the current presentation is different to previous presentations/episodes in a way significant enough to warrant suspicion of an alternative/co- morbid diagnosis – e.g. increasing treatment resistance, new onset of different symptoms (e.g. new cognitive symptoms, new psychotic symptoms in a patient with previous history of mild-moderate depressive episodes in the context of life stressors)
Our screening process will review impact of co-morbidities such as stroke, head injuries, established neurological/psychiatric diagnoses or history, substance use, on a case-by-case basis
Controls:
(1) Aged 18+ ; (2) No cognitive symptoms; (3) No established or current active diagnosis of neurological, neurodegenerative, and psychiatric disorder; (4) No heavy alcohol or illicit substance use disorder; (5) No stroke or traumatic brain injury within 18 months
B. Other substudies currently recruiting:
- 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), as well as people who are symptomatic
- People with diagnosed or suspected behavioural variant frontotemporal dementia, or, non-progressive bvFTD / bvFTD ‘phenocopy’, of any age and duration of symptoms
- 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 <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)
- We’re interested in collaborating on any other common or rare symptoms/diseases – please get in touch!
Please note: the referral form is for doctors and other healthcare professionals to refer their patients. If you are someone who is interested in joining the study as a participant with symptoms or as a healthy control, please discuss with your GP, specialist or other treating healthcare professional, or contact us via the website www.themindstudy.org
What happens next?
After receiving the referral, we will contact the participant and/or alternate contact person within 2 weeks, to discuss the Study, and for screening, consent, and recruitment. Participants will have the option to complete all Study requirements via telephone/telehealth, and blood collection via community collection centres.
Requirements for participants are minimal. Essentially, participants consent to:
- providing a blood sample for storage and analysis
- sharing of relevant clinical data and data linkage with treating healthcare professionals
- providing a second blood sample 12-24 months later (ideal, but not mandatory)
- optional basic questionnaires and scales for the participant and and informant
An infographic for participants/potential participants, on what it means to take part in the Study:
More information will be added to this page, as the MiND Study gets underway.