make a referral to the MiND Study

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:

  1. Diagnosed or suspected CJD
  2. Diagnosed or suspected functional neurological disorders (including functional cognitive disorders, psychogenic non-epileptic seizures)
  3. People with Niemann-Pick Type C, their parents and siblings
  4. People with a known genetic cause for neurodegenerative disorders, who are presymptomatic (e.g. C9orf72MAPTPSEN1), as well as people who are symptomatic
  5. People with diagnosed or suspected behavioural variant frontotemporal dementia, or, non-progressive bvFTD / bvFTD ‘phenocopy’, of any age and duration of symptoms
  6. 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
  7. 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)
  8. 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:

  1. providing a blood sample for storage and analysis
  2. sharing of relevant clinical data and data linkage with treating healthcare professionals
  3. providing a second blood sample 12-24 months later (ideal, but not mandatory)
  4. 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:

flowchart of what it means to participate in the MiND study and participation requirements