MiND Matters Newsletter – May 2021 – exciting updates from The MiND Study

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Welcome to the second edition of the MiND Matters Newsletter – a quarterly communication from the MiND Project Team to keep our Investigators Team informed, updated and engaged on all things MiND. Our mission is to transform the care of all people with symptoms and illnesses of the mind and brain, by studying neurofilament light and other biomarkers, and a range of other markers in a range of neurodegenerative and neurological, and psychiatric disorders.

A bit has transpired since our last communique, and we have some exciting wins and updates to share with you in this edition! 

The MiND Study is open for referrals and we’ve started recruitment! Well done to everyone, especially the Core Team for the huge efforts to get us up and running! Since going live Feb 2021, we have received over 50 referrals and recruited 25 participants from across Victoria. These referrals are largely from Neuropsychiatry at RMH, and we hope that more will start to come from GPs and other specialist settings. Special mentions to Drs Matt Kang, Samantha Loi and Profs Dennis Velakoulis and Mark Walterfang, for all the referrals so far – please keep it up!

We are also getting interest from the public via our website, to participate as healthy controls, which is fantastic!  Governance is moving along, thanks very much to Angela Watt and RMH HREC, and Marietta Chiodo and the team at UoM. Our MiND questionnaire packs have been finalised (thanks Dr Ilias Goranitis and many others) and approved by HREC Community (super quickly – thanks again RMH HREC). Community blood collection is working smoothly for participants and the Study team alike. We are currently looking at taking the Study interstate, and are excited about the possibilities. I’m sure we will have more to update you on in our next edition of the newsletter. Stay tuned! In the meantime, please keep MiND in MiND, spread the word, think about referring your patients, to help us and to meet our Study aims.

Our secure REDCap MiND referral form is now live and available on the MiND Website – www.themindstudy.org

The MiND website has been updated to include comprehensive information for health professionals and referrers, including detailed patient eligibility criteria, and the concise and easy to complete (in 1-2 minutes!) e-referral form.

Please share the website details amongst your professional and personal networks,
to help us reach our ambitious recruitment target of 500 participants by 2022.

The MiND website also houses information for participants, researchers and the general public. We’d love to get your thoughts on the site.

Our digital and print-based patient-facing and clinician-facing promotional Study material (i.e. flyers, waiting room posters, digital and print info packs, brochures, and infographics) are currently being designed. We look forward to sharing these with you soon via the website!

COVID-19 has not stopped us reaching out to tell people about this important study. Thanks to Zoom, we have been able to present to the following audiences: CDAMS Coordinators’ Forum, RMH Neuropsychiatry Professorium, RMH Neurology Grand Round, Aged Persons Mental Health Programme, and individual specialists working in the area of geriatrics and old-age psychiatry.

We plan to extend the road trip to public and private hospitals.

Audiences are always so positive and excited about the possibilities of the MiND Study, and we receive excellent thoughts and feedback which is so rewarding to the Study team.

A key challenge for our Study is maintaining this interest and referrals. Any suggestions and advice from you would be much appreciated. For example, should we incentivise referrals? Get in touch with us with your thoughts.

In order to help streamline the recruitment of participants in general practice (which will be particularly important to us as the COVID vaccination rolls out in primary care nationally), the Study team will be using both the Patron Database and Future Health Today.

Future Health Today is a proactive digital health intervention that uses data from health records to automate the detection of chronic disease to provide new opportunities for early intervention and improved health outcomes. The algorithm for the MiND Study is currently in development. The good news is that we will also be able to tap into the network of general practices that currently work with FHT.

PATRON is a human ethics approved program of research, part of the Data for Decisions initiative of the Department of General Practice (UoM), incorporating an enduring de-identified repository of Primary Care data facilitating research and knowledge generation.

We are confident that our use of sophisticated platforms such as the aforementioned together with the roll-out of our solid GP stakeholder liaison and marketing campaign, will continue to generate interest in the Study as well as yield participants.

Jennifer Lowe recently joined the Integrated Mental Health Team in the Department of General Practice at the University of Melbourne as a Research Assistant for Clinical Trials in Primary Care Mental Health. She holds an Honours degree in Marketing from Monash University and is currently completing her PhD in Public Health at La Trobe University; her interdisciplinary research is being conducted in collaboration with the Public Health Palliative Care Unit and Olga Tennison Autism Research Centre.

Jennifer’s PhD focuses on autistic adults’ experiences with palliative care and end-of-life services as well as their experiences of adjusting to grief due to bereavement. She also worked on an industry-based project with the Australasian Cemeteries and Crematoria Association that examined changing memorialisation practices and potential relationships to bereavement outcomes. Her work has been presented at international palliative care and autism conferences and her articles published in peer-reviewed journals including the Journal of Retailing and Consumer Services, Omega Journal of Death and Dying, Bereavement Care and Palliative Care and Social Practice.

Jennifer also volunteers for a community-based palliative care service, offering support to autistic clients, carers and their families.

Associate Professor Alexander Santillo is a consultant psychiatrist and associate professor based in the cities of Lund and Malmoe in the southern tip of Sweden. His clinical time is shared between the memory clinic and the psychiatric clinic and correspondingly his research is focused on frontotemporal dementia and schizophrenia, studying biomarkers (fluid and imaging) and disease models.

He has a longstanding collaboration with researchers in Australia, originally in Canberra and now, thanks to MiND, also in Melbourne. He has had the pleasure of visiting Melbourne and Sydney in 2018 for the RANZCP and for the FTD Congress (two birds with one stone).

During the pandemic he has spent more time than usual in the kitchen, and he is quite proud of his arancini (deep-fried cheese-filled Italian rice balls) and his home made ravioli.

We are always on the look-out for additional funds to aid in promotion and marketing of the MiND Study – to maximise recruitment of participants for the Study.
If you know of any philanthropists with an interest or passion in this space, and/or would like to join us in the Colour Run in Melbourne in 2021, please reach out via email to our RA, Stefanie Colella

Do you want a fabulous MiND Mug? Reach out to the team!

All we are asking is that you tag us @theMINDStudy in your socials + take a selfie of yourself holding the mug? (Just an idea guys; it’s a bit of fun and these things work well on social media)

The MiND Study Team
Neuropsychiatry, The Royal Melbourne Hospital

www.themindstudy.org
contact@themindstudy.org

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