MrsSamantha Bramich

Project Total: $98,470; Isolated REM sleep behaviour disorder (iRBD) is a risky health condition - people with this sleep disorder have an 80-90% chance of developing a neurodegenerative disease over the next decade of their life. We know little about whether people with iRBD want to know about future risk, or if they engage in lifestyle changes to maximise their brain health to slow disease progression. This project will explore attitudes to iRBD risk disclosure in the Tasmanian community and investigate the real-world impact of this condition on people with iRBD. This is a rare opportunity as there are few iRBD research groups worldwide and results will help inform and improve clinical practice and diagnostic outcomes for people living with iRBD in Tasmania and globally. Thise project will extend on the iRBD research being undertaken in the ISLAND Sleep Study, by investigating attitudes and opinions towards NDD risk disclosure in people living with iRBD and in the Tasmanian community. We hypothesise that people with iRBD and community members will have favourable views of risk disclosure, and do utilise opportunities to engage in lifestyle risk modification to improve brain health. This will be measured via 2 aims:1. To assess attitudes and opinions towards risk disclosure in iRBD, in both people with iRBD and the general community. 2. To measure the uptake of good brain health resources in those with iRBD. Participants with iRBD will be recruited from the ISLAND Sleep Study and Royal Hobart Hospital neurology and sleep medicine departments to complete an online survey regarding attitudes and opinions of iRBD risk disclosure. All participants in the ISLAND Sleep Study will also be recruited to gauge general community data. This research will pave the way for a greater focus on risk disclosure in iRBD, not only in clinical care, but also in international iRBD research cohorts. As research teams prepare for a future of disease-modifying clinical trials in this population, it is vital that they consider the information provided to participants to ensure that their autonomy is maintained. Funded by: Royal Hobart Hospital Research Foundation - Research Project Grant ($98,470); University of Tasmania.

Project Total: $99,000; The aim of the Tasmania Parkinson Project is to provide a platform at UTAS for Parkinsons related research, education and communication. We aim to recruit at least 500 people with Parkinsons in Tasmania (currently we have 5200 participants in total but only 300 living with Parkinsons in Tasmania). The cohort will be asked to complete 3 levels of data collection (with level 3 data largely limited to those residing in Tasmania). Level 1 surveys /questionnaires Level 2 at home collection TasTest digital motor, cognitive and speech data Smell tests (UPSITS) Actigraphy for physical activity and circadian rhythm Level 3 clinic collection Bloods Urine Stool Sebum Gait analysis Face and Eye tracking Voice analysis MOCA and other cognitive measures This will/does provide a well characterised cohort for clinical trials and cohort studies. Funded by: Donation via Menzies Institute for Medical Research - Donation ($99,000); University of Tasmania ($36,000).

Project Total: $5,000; Data Sharing Agreement between QMUL and UTAS for COMPASS-31 data collected through UTAS' ISLAND Sleep Study. QMUL paying UTAS $5K for the data. Funded by: Queen Mary University of London ($5,000); University of Tasmania.

Project Total: $38,420; Isolated rapid eye movement (REM) sleep behaviour disorder (iRBD) is a prodromal symptom of Parkinson's disease (PD) and provides a golden opportunity to detect and monitor the early signs and progression of PD decades earlier, when there is a much higher chance of interventions slowing, or stopping, progression. This project will use precision tracking tools to monitor changes in motor, cognitive and sensory function over time to improve community-based monitoring of the trajectory of iRBD to overt PD symptoms. Funded by: The MPST Foundation Ltd - Grant-Medical Protection Society of Tasmania Foundation Grant ($38,419); University of Tasmania.

Project Total: $211,647; We plan to collect and deliver 500 blood samples from new participants with paired demographic and clinical data in 12 months.The country of birth, ethnicity, diagnosis, UPDRS where appropriate, UPSITs where available (and any other clinical data requested and available) will be delivered to MJFF/GP2 paired with the blood samples. Blood samples will be from a range of adults in Tasmania that are relevant to GP2 including diagnosed PD, young-onset PD, atypical Parkinsonism, prodromal PD (hyposmia defined by UPSITs, iRBD, probable RBD), people with 2+ family members with PD as well as age/sex-matched healthy controls. Funded by: The Michael J. Fox Foundation for Parkinson's Research ($105,030); Shake It Up Australian Foundation Trust ($105,823); University of Tasmania.

Project Total: $5,131; Contract to enable the transfer of funds for University of Tasmania staff to assist with collaborative University of Melbourne research projects. Funded by: University of Melbourne ($5,131); University of Tasmania.

Project Total: $24,999; Poor sleep is common in the community, but even more common in people living with MS. Poor sleep has serious impacts on health, including clinically important reductions in quality of life. Treatments to improve symptoms and sleep are urgently needed in people living with MS. To do that, we need to assess sleep in a better way than we do now. This research program will use activity monitors to investigate whether using activity monitors 24/7 for up to 21 days and daily assessment of MS symptoms using the My Symptoms app for up to 21 days is feasible and acceptable, what the shortest duration of assessment is that will still give good quality data, and whether we can predict who will not want to use actigraphs and symptom trackers, and, when used, whether they provide better data on sleep, over and above that captured by standard questionnaires. We will use learnings to plan and appropriately power future clinical trials for sleep in people living with MS. Funded by: Multiple Sclerosis Australia - Grant-Incubator ($24,335); University of Tasmania.

Project Total: $114,227; Adults with iRBD have a 90% chance of developing dementia or other neurodegenerative disease (ND) within 10 years. However, iRBD is under-recognised. This project will continue to identify iRBD prevalence in Tasmania, and characterise associated features of the disorder, to better understand it's trajectory to ND. Funded by: The Michael J. Fox Foundation for Parkinson's Research - Donation ($114,227); University of Tasmania.

Project Total: $33,900; This project will be the first to characterise olfaction and circadian patterns in an iRBD cohort in Australia, and in a population of healthy older Tasmanian adults. The project will yield important outcomes: (i) For the first time, we will characterise olfaction in an at-risk group of Tasmanian adults. (ii) Our understanding of olfactory loss and circadian profiles in people with iRBD will be improved and this will help identify how such factors are associated with later progression to ND. (iii) Collection of blood samples (in kind) alongside olfactory scores (funding requested) from this unique cohort will assist in the development of a world-first blood test for the early detection of Parkinsons disease (iv) Identification of a high-risk iRBD population with baseline olfactory and circadian data will impact both future iRBD research and clinical care. Detailed profiling of this unique sample of participants will improve treatment and intervention opportunities for people with iRBD, as well as attract collaborative opportunities to Tasmania (including clinical trials) with industry and other academic institutions. Funded by: The MPST Foundation Ltd - Grant-Medical Protection Society of Tasmania Foundation Grant ($33,901); University of Tasmania.

Project Total: $24,874; Parkinsons disease (PD) is the fastest growing neurological disorder worldwide with a doubling of prevalence in the last 20 years, and this is expected to double again before 2050. The underling pathology of PDis characterised by accumulation of alpha-synuclein (a-Syn) proteins in the brain, which leads to abnormal movements, tremor, falls and poor quality of life. Currently, diagnosis relies on neurologist/geriatrician assessment detecting abnormal movements, which is expensive and often inaccessible .Recentlya new methoddetected a-Syn proteins in the cerebrospinal fluid (CSF) and this has led to a lot of excitement and hope as it means we may be able to detect PD 20 years earlier.However, CSF testing is invasive, expensive and not widely available. What we need is a new, simple blood test to detect a-Syn proteins. Research is underway to develop this test, and we are lucky in Tasmania to have built up a large cohort of people with prodromal Parkinsons (or isolated REM sleep behaviour disorder (iRBD)), whose blood can be collected to contribute to this development. We also have a chance to establish a new screening tool to identify iRBD remotely; we have created a detailed iRBD telephone screening and a gold-standard video-polysomnography (vPSG) system that is being taken into peoples homes to collect the precise data needed to accurately diagnose iRBD and this has been robustly tested on 30 participants so far, with excellent results. By accurately identifying people with iRBD and collecting their blood for a-Syn analyses, we have a chance to be one of the first research teams in the world to help develop the earliest test ever for PD. Funded by: Royal Hobart Hospital Research Foundation - Grant-Project ($24,874); University of Tasmania.

Project Total: $250,000; It is the Donors wish that the gift be used by the University for the following purpose: To develop and pilot a Parkinsons Massive Open Online Course (MOOC) under the Tasmania Parkinson Project- a University of Tasmania collaboration between the Wicking Dementia Research and Education Centre and the Menzies Institute for Medical Research. Funded by: Parkinson's Boutique Research Fund Pty Ltd - Donation ($250,000); Donation via University of Tasmania Foundation ($35,727); Cuthill Foundation ($7,500); The Florey Institute of Neuroscience and Mental Health ($1,120); University of Tasmania.

Project Total: $24,880; Physically acting out your dreams is a very early symptom of Parkinson's Disease (PD). This project will investigate the cognitive-motor function of people with this sleep disorder compared to healthy controls and those with PD, to develop a simple test that detects PD >20 years earlier than we do now. Funded by: Royal Hobart Hospital Research Foundation - Grant-Project ($24,880); University of Tasmania.

Project Total: $16,000; Multiple sclerosis (MS) is an autoimmune disorder of the central nervous system. While MS remains rare, MS is more common in Tasmania (per capita) than elsewhere in Australia(1). Poor sleep is common in the community and even more common in people with MS (pwMS) (2) and include insomnia, sleep apnoea, and restless leg syndrome(3-8). A recent paper from CIs Laslett, van der Mei, Taylor and Honan demonstrates that two thirds of Australians with MS have sleep quality in the clinically poor range(2). We showed poor sleep is strongly associated with worse health related quality of life independent of MS symptoms and obesity(2). Deficits in quality of life due to poor sleep are in the clinically relevant range. By attempting to understand dysfunctional sleep in MS we have an opportunity to improve quality of life and make a difference in the lives of people with MS. To demonstrate we can use activity monitors to collect sleep data (24/7, 7-14 days). Demonstrate that using the My SymptoMS app daily is acceptable to pwMS. Evaluate the optimal duration by which activity monitors should be used to reliably measure sleep in pwMS without overburdening participants (7 vs 14 days). Validate sleep data from My SymptoMS compared to data from activity monitors and questionnaires. Investigate associations between activity-monitor assessed outcomes and quality of life, and symptoms using the My SymptoMS app. Funded by: Menzies Institute for Medical Research; University of Tasmania ($16,000).

Project Total: $9,700; Adults with RBD have a 90% chance of developing dementia or another neurodegenerative disease (ND) within 10 years. However, RBD is difficult to diagnose. This project will evaluate 24-hour actigraphy (activity) watches for detecting probable RBD (pRBD) in Tasmania. Funded by: Royal Hobart Hospital Research Foundation - Grant-Incubator ($9,700); University of Tasmania.

Project Total: $22,712; This project will determine the prevalence of Isolated REM Sleep Behaviour Disorder (iRBD) in Tasmania. Up to 90% of people with iRBD will progress to a ND, such as dementia with Lewy Bodies and Parkinson's disease, within 10 years of first diagnosis. This makes iRBD one of the highest risk factors for dementia and other ND. The prevalence of this disorder remains unclear, as few people recognise the significance of iRBD symptoms, and few prevalence studies have been conducted. It is estimated that iRBD affects 2% of the population, but there have never been any prevalence studies in Australia. Participants from the ISLAND Sleep Study will be invited to have a sleep study in their home to confirm a diagnosis of iRBD and will also complete several cognitive-motor-olfactory assessments. This project will identify adults in the Tasmanian community who have iRBD and investigate the cognitive, motor and olfactory characteristics associated with progression to dementia and other neurodegenerative disease. Funded by: Clifford Craig Foundation - Grant ($22,712); University of Tasmania.

Project Total: $24,818; Adults with RBD have a 90% chance of developing dementia or other neurodegenerative disease (ND) within 10 years. However, RBD is under-recognised. This project will identify RBD prevalence in Tasmania, characterise its associated features, and offer risk reduction strategies with the long-term aim of decreasing the incidence of ND. Funded by: Royal Hobart Hospital Research Foundation - Grant-Project ($24,818); University of Tasmania.