MiND Matters Newsletter – September 2020 – exciting updates from The MiND Study

  • dha 

Welcome to MiND Matters – The MiND Study Newsletter – SPRING 2020

Welcome to the first edition of the MiND Matters e-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.

We are excited about our collaborations and working together, and the opportunities the future holds.

the mind study website screenshot

We’re pleased to announce that MiND is now online for a one-stop-shop/portal for all things to do with the MiND Study. On www.themindstudy.org there’s information for participants/potential participants, referrers and healthcare professionals, students and researchers, online portals for the MiND Study Group, and most importantly, details on eligibility criteria and the referral form! Although we’ve just started, we plan to add a significant amount of content soon. Also, @themindstudy is on Twitter! Please check us out, and any feedback would be most welcome!

We had our very first MiND Investigators Team Zoom Meeting on 7 May 2020. We were pleased to have had such a great turn out. We would like to thank everyone from far and wide, for taking time out of their busy schedules (across multiple time zones) to attend. It was wonderful to have such a great turnout and to have everyone meet and connect. The discussion was very helpful with many important points to help guide us.

The meetings will be held quarterly (four meetings annually), with our next Zoom meeting tentatively scheduled for November 2020.

We submitted our ethics application in May and responded to queries on 6 August.

You will all appreciate the amount of effort involved, and indeed, a team effort, led by Dr Dhamidhu (Dhama) Eratne and Dr Anita Goh, with much support from Dr Samantha Loi, Carolyn Chadunow, and of course Professor Dennis Velakoulis.

We hope to be able to share the good news (that our ethics submission got approved) and celebrate with you in our next edition of MiND Matters. Stay tuned!

COVID-19 continues to affect us all, personally and in our professional, clinical and research lives. Even with the possible easing of restrictions in Victoria in the (hopefully, not too distant) future, the pandemic will still present some obvious challenges for our study, particularly regarding prospective recruitment of participants. The project team is committed to addressing possible COVID impacts, and as such, has prepared a comprehensive risk management plan for MiND.

Our plan includes maximising the use of already collected/retrospective data, access to existing patient cohorts through our strong networks and building collaborations, simplifying and streamlining recruitment and study participation (e.g. using telehealth/digital technologies to screen and recruit), and exploring community lab collection for blood samples.

We would welcome any additional suggestions you may have for us to help inform our risk management plan.

Dhama has done the MiND Study proud, having been on a whirlwind MiND roadshow, raising awareness, building collaborations and sharing results by presenting to national and international clinical and research audiences; including at the Alzheimer’s Association International Conference (AAIC), Walter and Eliza Hall Institute of Medical Research (WEHI), Neuropsychiatry Research ‘Professorium’, University of Melbourne Psychiatry Colloquium, and Department of General Practice ‘Research Matters’ meetings, just to name a few.

One of the most helpful aspects of these talks has been the discussion and the excellent questions and feedback from audience members from diverse clinical, research and scientific backgrounds. We have uploaded a copy of Dhama’s AAIC presentation and poster on the MiND website Team Portal. Did you know the AAIC this year had over 21,000 registrants online? Now that’s a captive audience.

Please reach out to us if you have any other suggestions or know of any other forums that may be interested in having us present on MiND.

Our overall recruitment target is 500 participants over 2.5 years from Neuropsychiatry, memory clinics, other hospital and private services, including 200 participants from general practice. We are fortunate to have the expertise of Professor Jane Gunn and Dr Cath Kaylor- Hughes from the Department of General Practice at the University of Melbourne on our project team. We will use the remainder of 2020 to plan and prepare our GP recruitment strategy, with implementation commencing in early 2021 – not too far away now!

Our strategy will entail a multi-pronged approach to recruitment; including 1) use of sophisticated primary care databases and in-practice digital technology platforms to identify and ‘red flag’ potential participants; 2) more traditional methods for screening and recruitment (e.g. in-practice surveys, study staff visiting practices); 3) engagement with professional, community and consumer groups (including clinical research websites and databases); and 4) general awareness raising of the study through health and mainstream communication and media channels

This section of the newsletter is all about celebrating our wins and achievements as investigators– however big or small. Please let us know if you have anything interesting to share – news, awards, new publications, media coverage, honorary mentions, and the like.

Congratulations to our colleagues and collaborators, Dr Shorena Janelidze and Professors Oskar Hansson, Kaj Blennow and Henrik Zetterberg on the recent publications on P-tau181 and P-tau217 . It is exciting to see these and other rapid developments in the field.

In this section, we will be introducing investigators, initially from the project team and then we will randomly select researchers from the wider Investigators Team. So just a heads-up that we may be tapping on your shoulder to get a brief bio from you (only if you are interested of course!), and perhaps a humorous anecdote or two.

We would like to introduce you to Dr Dhamidhu (Dhama) Eratne. Dhama has been a Consultant Neuropsychiatrist at Neuropsychiatry, The Royal Melbourne Hospital since 2017, and is an early career researcher and PhD student. His clinical work is mainly in the diagnosis, assessment and ongoing management of younger onset dementia and complex neurodegenerative and neuropsychiatric disorders, and his interests include biomarkers, clinical reasoning, and improving diagnosis and outcomes for people with psychiatric, cognitive and neurological symptoms. He is also an Honorary Fellow at the WEHI Watson/Yassi lab and the Florey Institute of Neuroscience and Mental Health, Research Fellow/Clinician on the Melbourne Genomics Complex Neurology Exome Sequencing Study, and of course on the MiND study!

Something you may not know about Dhama is that he is a self- confessed IT/digital geek,and likes procrastinating by designing things (and is the person behind the MiND logo.

We would love to hear from you – if you have any feedback on newsletter content, ideas for sub-studies and collaborations, funding opportunities, students, upcoming events/presentations, any interesting news, and/or any questions or concerns, or if you simply wish to say hello, please reach out to us via our contact details below.

The MiND Study
contact@themindstudy.org
www.themindstudy.org

Neuropsychiatry, The Royal Melbourne Hospital
www.neuropsychiatry.org.au

Leave a Reply

Your email address will not be published. Required fields are marked *