Early detection and personalized interventions to improve outcome and quality of life in people with neurodegenerative disease

Neurodegenerative disease such as Parkinson's disease (PD) and dementia with Lewybodies, (DLB) often combined as a-synucleinopathies, and Alzheimer's disease, are among the major health challenges worldwide. Increasing evidence suggests that the underlying disease processes start years or even decades before the clinical onset of the defining cognitive and motor. This lengthy prodromal phase provides a unique opportunity to detect, monitor and dissect early neurobiological changes while individuals have only mild and unspecific prodromal symptoms like impaired smell sense, constipation, sad mood, anxiety, or abnormal dream enactment during sleep. Such information is vital for improved early diagnostics, prognostics and ultimately development of disease-modifying and preventive treatments, and is now possible to obtain using novel and sensitive in vivo techniques. The aim of the project is to gather a strong network of scientists to develop EU research applications, focusing on novel diagnostic methods to identify people with prodromal neurodegenerative diseases, development of models for user involvement, implementation of available personalized interventions, and outline strategies for developing novel interventions. To address the objectives of the project, the project team has focused on relevant calls in the EU, both Horizon2020 and others, and together submitted several applications during 2018. As a first attempt to address these important issues we brought together a strong consortium of Parkinson?s disease researchers and developed a project plan to submit to the IMI2 13th call for proposals, which focused on repurposing agents. Our study plan was to perform a randomized placebo-controlled trial with a nicotinic agent (AZS0328) to improve cognition in Parkinson-patients with mild cognitive impairment. The full application was approved and the project has entered the grant agreement stage. Norwegian participants include the Norwegian Movement Disorders Centre at Stavanger University Hospital, head - prof Guido Alves and the Norwegian Parkinson Association, head - Magne Wang Fredriksen. The application "Self-management and HeAlth Promotion in early-stage dementia with e-learning for carers (SHAPE)" - A randomised controlled trial, was sent to JPND in 2018. The application was granted funding of circa NOK 30 million. The project is coordinated by SESAM/SUS and will be carried out with partners from The University of Exeter and London City College in England, the University of New South Wales in Australia and the National Center for Aging and Health. The project will be repeated in Slovenia and Austria to ensure that it can be transferred and used in different countries. Initiated by a strong research group at King's College London we submitted a research plan to the IMI2 15th call for proposals, Topic 5 - DEVELOPMENT AND VALIDATION OF TRANSLATIONAL PLATFORMS IN SUPPORT OF SYNAPTOPATHY DRUG DISCOVER, entitled SYNaptopathy ERadication technoloGY (SYNERGY Platform). This is a highly translational research program aiming to develop preclinical and clinical platforms to measure synaptic changes in CNS diseases (Alzheimer's disease, Parkinson's disease, and schizophrenia) across disease stage, but in particular the early stages. The project involves preclinical (cell culture, hiPSC, flies and rodents) and clinical work (clinical trials), with a particular focus on validating existing synaptic PET ligands and developing novel ligands. The application was submitted within the deadline October 24th.The Norwegian participants include University of Oslo (Profs Ole Andreassen and Tormod Fladby, and associate prof Patrick Riss). To strengthen the collaboration between relevant research environments, nationally and internationally, SESAM organized the Brainnovation Conference (9-10 October 2019) in collaboration with the Centre for Brain Health and the Research Department at SUS. Researchers from Hungary, as well as researchers from SUS, UIO and UIB were among 40 participants who were invited to participate. There were approximately 15 presentations, as well as an EU Workshop where partners with the most experience/success in EU Calls shared their experiences. User participation plays an integral role in SESAM's research to ensure that work is based on the principles of Patient and Public Involvement. WiseAge is SESAM's platform for user involvment and community engagement. In collaboration with WiseAge, we organize events such as the WiseAge festival and the WiseAge stormøte, to disseminate the research we do and to recruit new participants. November 20, 2018 was the WiseAge stormøte. The theme of the meeting was e-health technology and research at SESAM. WiseAge conference was in May 2019 and lasted several days. WiseAge stormøte was held on November 15, 2019 where Phd students at SESAM present their research and the audience had the opportunity to come with input to the research.

Hovedmålet med prosjektet var å styrke samarbeid innen relevante forskningsmiljøer knyttet til tidlig oppdagelse, diagnose og behandling, omsorg og livskvalitet og brukermedvirkning for Nevrodegenerative sykdommer. I løpet av prosjektperioden har konsortiet fått tildelt hele 5 koordinatorprosjekter fra EU (med hhv SUS, KCL, OUS, og AHUS som koordinator). I tillegg til de akademiske gevinstene det gir, er den viktigste virkningen den muligheten det gir for norske (og internasjonale) pasienter og pårørende å få delta i spennede forskningsprosjekter, som kan gi tilgang på bedre diagnostikk, behandling, oppfølging - og på sikt bedre livskvalitet og helse

The aim of the project is to gather a strong network of scientists to develop EU research applications, focusing on novel diagnostic methods to identify people with prodromal neurodegenerative diseases, development of models for user involvement, implementation of available personalized interventions, and outline strategies for developing novel interventions. Neurodegenerative diseases are the major causes of dementia, and among them Alzheimers disease (AD) is the most common, followed by Lewy-body diseases (LBD) such as dementia with Lewy bodies and dementia associated with Parkinsons disease. The World Health Organization estimates the cost of dementia diseases in EU to be more than 160 billion euro per annum, and the number of people with dementia is expected to rise. In this project we will deepen, broaden and expand the available strong national, multidisciplinary network on neurodegenerative diseases. In collaboration with expert international collaborators, we will find optimal ways of sharing resources and knowledge and working together in research projects, with the aim to develop research programs for competitive applications for relevant EU research grants. In addition to building on our high-level neuroscience skills and expertise, we will have a strong focus towards immediate real-life implementation and involvement of relevant stake-holders, in particular patients and patient organizations. The research plan will focus on developing recruitment strategies, and harmonizing of procedures for clinical assessment and biomarker collection, handling and storage. We will develop strategies for the management of large multicentre projects. A continuous focus will be on clinically relevant benefits both for early and accurate diagnosis, but also on implementation of optimal personalized intervention strategies, and, most importantly, discuss the development of novel management strategies.