Welcome to MiND Matters
The Markers in Neuropsychiatric Disorders Study Newsletter
Festive Issue – December 2021
Welcome to the festive and 2021 wrap up edition of our MiND Matters e-newsletter. What a year it has been! Looking back at 2021, we would like to acknowledge and celebrate our many achievements, despite living through a pandemic. We are thankful for the ongoing work and support of our partners and collaborators, as well as our participating GP clinics, medical specialists, and of course, our patients, participants, and their families. We are looking forward to a big 2022, where we will continue working hard to meet our recruitment targets (the big 500) and spread the word about this exciting Study, through our ongoing communication and stakeholder engagement and partnerships. We hope that you too are looking forward to being part of this exciting journey with us. We would like to take this opportunity to wish each of you and your families a very happy, safe, and healthy festive season and New Year, and we look forward to continuing exciting work and collaborations together.
As we draw near to year end, we are pleased to report that we have received over 320 referrals, and we have achieved another huge milestone – recruiting over 200 participants! This is no small feat, given the challenges faced in 2021. Referrals have mainly been from Victoria, across private and public specialist clinics and Neuropsychiatry, The Royal Melbourne Hospital. Increasing numbers of referrals are starting to come from memory clinics and GPs, and from interstate, and we hope that these will only continue to grow in 2022.
The Study Team are looking forward to a big 18 months of recruitment activities. We still aiming to reach our ambitious target of 500 participants. Thanks to the ongoing incredible work of our core team and recruiters (special mentions to Courtney Lewis, Drs Dhamidhu Eratne, Matthew Kang, Khalil, Sami Saad, Tamara Yuen, Sarah Holper, Karen Robinson, and so many more – too many to list!), all the referrals and support from so many clinicians and all our collaborators, along with our plans to leverage databases and other recruitment strategies, additional implementation of communication and stakeholder engagement strategies, and MiND going national (across WA, QLD, SA, and soon NSW), we remain optimistic and anticipate that recruitment numbers will continue to steadily grow. Coming back to interstate – this, as we are sure you would appreciate, is a massive development for The MiND Study. Special thanks to our community pathology collaborators, and Brett Trounson and Dr Chris Fowler at the Florey.
GP Recruitment Update
Engagement and recruitment in general practice has been particularly challenging since the MiND Study went live in February this year. Understandably so, participation in research has fallen to the bottom of the priority list for our already stretched GPs and their practice teams, with all the competing demands and stresses that COVID has presented (and to some extent, is still presenting, as we move out of restrictions and must deal with vaccinations and the backlog of work). Despite this, we are proud to inform you that we more than 18 general practice clinics enrolled in the Study, mainly from Victoria. These participating practices continuously tell us that they are proud to be involved in what they see as an extremely important study, for improved clinical care for their patients. We look forward to working with all our GP clinics, new and existing, in 2022. Please see our Comms section for our new GP Memo communication! A special thank you to our MiND GP Recruitment Team (Dr Cath Kaylor-Hughes, Nikki Milani, Naomi Hudspeth, Professor Jane Gunn) at the University of Melbourne’s Department of General Practice, for all their work in contacting GPs and spreading the word about the MiND Study.
Meet the Practice
Sherbourne Road Medical Clinic
Tell us a little about your practice
·Sherbourne Road Medical Clinic is a long established general medical clinic that opened on 19/05/1980 as a solo medical practice run by Dr Richard Alexander. Over the next few years several other doctors joined the clinic which included Dr Ric Wong, who is still with us today and has been a partner for 25 years. Dr Alexander left the partnership in 2004 and reduced his hours and retired in 2007. Dr Joanne McClean has worked at the clinic since 1994 and has been a partner since 2008. Dr Ishita Palit joined the clinic and became a partner in 2004 and Dr Robert Chu became a partner in 2008. These wonderful foursome are our partnership team who lead the whole team with love and care. Our mission is to provide the highest standard of patient care whilst incorporating a holistic approach toward diagnosis and management of illness. We are committed to promoting health, wellbeing and disease prevention to all patients.
Why did you decide to participate in the MiND Study?
We have decided to participate in the MiND Study to help contribute to disease prevention. To be able to diagnose or rule out dementia and other illnesses early would help our patients negotiate the care they need and be proactive beforehand to lead the best possible life they can lead, with all the support they may need or want.
What would a routine blood test mean for your practice and for your patients?
A routine blood test if it is accurate would be a great help to both our clinic and our patients. To be able to take the uncertainty of worrying about the possibilities of having this disease and to be able to know either way would be so beneficial to our doctors to manage and beneficial to our patients and their families to be able to support the patient and be proactive in their ongoing care.
What is your favourite MiND Pun?
Our favourite puns are “Do You MiND” and “MiND full cup”.
Keeping MiND in Mind – MiND Communications Update
The MiND Study has recently been featured in the MACH newsletter and is scheduled to feature in the APNA Primary Times glossy publication in early 2022. In response to the high demand, we will be launching two additional MiND Study newsletters: a community newsletter (called ‘MiND Comm’) and a GP-specific newsletter (called “MiNDful GP memo”). If you’d like a copy of either of these new newsletters for yourself and/or to share amongst your networks, please email the team directly, or visit our website for updates. We have been planning our communication and stakeholder engagement activities for 2022. The focus will be to continue to keep up the interest (and participation) in Victoria, as well as broaden our efforts to the other states. We have a social media recruitment drive for the MiND Study via the RMH Socials, planned for early 2022. We hope to go viral! A friendly reminder to please follow us on Twitter And to reiterate, we have new MiND Study participant-facing and clinician-facing promotional material (posters, flyers). Please contact the team at: firstname.lastname@example.org if you are interested in receiving printed copies.
As always, we welcome any ideas or contacts you may have to support our communication and engagement endeavours – we enjoy presenting, meeting and discussing with colleagues far and wide.
Papers and Presentations
Why we do what we do
As you know, The MiND Study is all about clinical translation and improving assessment, care, and outcomes for real people. In all of our clinical practices, we hear stories of the “diagnostic odyssey”, misdiagnosis, delay, uncertainty, and all the pain and frustration, for patients and families. Hearing participants’ thoughts on the Study and their reasons for participating, are additional powerful reminders of the importance and *the ‘why’, of what we’re doing. While we are effusive in expressing our gratefullness to participants, since we can’t do such studies without their help, we’re humbled by how often participants express gratitude to us, and want to know how they can help spread the word or contribute more to the study.
Some deidentified and paraphrased quotes:
“I’ve had three lumbar punctures, lots of CT and MRI scans, and still no one is sure what’s going on in my brain. If this test can be that accurate, if it could have figured out ages ago, or even now, if “something is going on”, that would have made such a huge difference. If this can help people in the future, that would be amazing, and I would love to help and be a part of this.”
“I’m very interested in this research. I have a family of dementia and Alzheimer’s. I’m worried I’m more forgetful these days. Early diagnosis and intervention has such big impact on quality of life. If a blood test can help with diagnosis, that would help improve long term outcomes for people.”
Meet our Amazing MiND and Master MiND
Professor Dennis Velakoulis
Professor Dennis Velakoulis is neuropsychiatrist (MBBS, FRANZCP, DMedSci, MMed, DipCrim) with extensive clinical and research expertise across the breadth of neuropsychiatry. He is Director of Neuropsychiatry Royal Melbourne Hospital (2001- current) and Clinical Director of the Melbourne Neuropsychiatry Centre, University of Melbourne (2004-current). Professor Velakoulis’ publications have covered a broad range of areas including neuroimaging, cognitive, genetic, mortality, metabolic, carer burden, service research across the clinical groups seen in neuropsychiatry.
You can read more about Professor Velakoulis and the rest of the Neuropsychiatry Team, here.
Why do you think the MiND Study is important?
Paradoxically MiND is a no brainer.
MiND Study Team Update
Claire Cadwallader joined the BeYOND (Biomarkers in Younger Onset Neurocognitive Disorders study) and the MiND Core Team in January 2021. Claire is a neuropsychologist-in-training and has been instrumental in following up BeYOND participants at their second time point, including their clinical information and obtaining blood biomarkers. She managed to do this during lockdown, amidst PhD debacles, coordinating other projects and looking after a dog! Claire has been the quiet achiever who gets the work done, and is motivated, smart, and caring. We thank Claire for all her hard work in this project during challenging times!
Also, a warm welcome to Nikka Milani and Naomi Hudspeth to the GP MiND Study Recruitment Team, both from the Department of General Practice at the University of Melbourne, who have been instrumental in getting GP clinics enrolled in the Study (thanks to their calling of hundreds of clinics!)
Finally, this is Dhama speaking now – a huge and special thank you to Stefanie Colella for all her massive efforts, achievements, and contributions, despite a trying year, that have benefitted MiND greatly: raising awareness via articles and communications about MiND far and wide, the RMH Foundation fundraising campaign, and of course, these wonderful newsletters, and more!