Welcome to MiNDful GP memo
The Markers in Neuropsychiatric Disorders Study Newsletter
First Issue – December 2021
In case you missed it…
Our Story on the ABC 7:30 Report
A recent ABC 7:30 report featured The MiND Study, younger-onset dementia, patient and family stories, and the need for improvements in diagnosis. You can read more by clicking here,and watch the report here. A big thank you to our patients and families, for sharing their stories. Stay tuned for more exciting communication wins in 2022!
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 the backlog of work).
Despite this, we are proud to inform you that we have a total of 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.
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.
Future Health Today
Future Health Today is a software platform designed by primary care for primary care. It streamlines the identification and management of chronic disease so that doctors and nurses can support patients to live healthier, longer lives.
The tool provides guideline concordant care recommendations relating to the identification and management of chronic diseases, including chronic kidney disease, cardiovascular disease, cancer and diabetes, and will be expanded in the future to include additional chronic conditions and mental health conditions.
The MiND Study has a Future Health Today module that participating practices can elect to activate. The module uses predetermined criteria to automatically identify patients who are eligible to participate in the MiND Study. Future Health Today will alert clinicians if a patient is eligible when the patient file is opened. Alternatively, a list of eligible patients can be generated through the Future Health Today Portal.
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”.
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.
Did You Receive Your MiND Enrolment Pack?
Please let us know if you have yet to receive an enrolment pack (which includes, MiND Study promotional material and information).
Would you like a MiND Mug? Refer a patient and we will send you one in the mail or deliver it in person!
If you require any additional material, would like to organise our team visit your practice, and/or have any questions or concerns, please do not hesitate to reach out to the team – attention your correspondence to Nikka and Naomi via Contact@themindstudy.org
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.”
We Value Your Input
We’d love to hear from you – if you have any feedback on newsletter content, would like your practice to be featured in an upcoming newsletter/social media post, have 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 www.themindstudy.org and on Twitter
We Need Your Help
A great article on newsGP features @themindstudy! Click here to view the article on newsGP. We need help from GPs to achieve our ultimate aim: a routine test for neurodegeneration, that would assist GPs and other specialists, and transform care for patients with cognitive, psychiatric and neurological symptoms, and their families. The eligibility criteria is simple (so simple in fact that almost everyone you see could be eligible!)
- People with cognitive/psychiatric symptoms: age 40-80, with recent (within 5y) onset of cognitive and/or psychiatric symptoms (on case-by-case basis: aged <40 or >80; recent dementia diagnosis (within 1-2y); long history of psychiatric illness but recent change raising suspicion for ‘something else going on’)
- People without symptoms / controls: age 18+ with no cognitive, psychiatric, or neurological symptoms and generally healthy
After receiving a referral, we take everything from there –screening and recruiting, organising blood sample and follow up information, which can all be done over the phone and online. Participation is simple – the main thing is providing a blood sample at a local collection centre, and agreeing for relevant clinical information to be shared with study doctors. Please click here for eligibility criteria (including for a range of sub-studies), and to refer. Our clinician and participant facing flyers, and PICFs, are all available here. The online referral form only takes a minute or two, but we want to make it as easy as possible for you as busy clinicians, so if it’s easier please flick an email to email@example.com, or call Dr Eratne on 03 9342 8750. We can also come to your practice and help in any way, e.g. with going through your patient lists / EMR. We’d love to hear any suggestions on how we can make things easier, any feedback at all, or if you’d like to get more involved, so please get in touch!