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BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering

ANeED Joint Effort 21: eHealth and a PPI-program in Dementia with Lewybodies (DLB)

Alternative title: ANeED DUGNAD 21: e-helse og PPI-program ved demens med lewylegemer

Awarded: NOK 16.0 mill.

Identifying digital bio-signatures in Dementia with Lewy Bodies This project addresses eHealth in Dementia with Lewy Bodies (DLB), a multi-organ disease affecting the brain by impairing cognition, motor function and by major psychiatric symptoms like visual hallucinations and delusions. DLB is affecting the peripheral autonomous nervous system reducing the heart rate variability and blood pressure control. DLB is highly prevalent with 15000 persons affected in Norway alone, progressing fast to end stage dementia and death with no approved disease-modyfying treatment. Here we focus on improving diagnostics, prognostics and treatment of DLB by including new eHealth solutions with wearables. This project builds on the ANeED Study, a National Norwegian Clinical Intervention Study testing the drug Ambroxol in DLB. We will validate our previously reported measures of caregiver distress. Finally, we will measure effects of an extended version of our Public and Patient Involvement Program (PPI) in selected communities to increase recruitment and containment of participants in the ANeED study. This project is led by Associate Professor Arvid Rongve from the Faculty of Medicine, Institute of Clinical Medicine (K1) at the University of Bergen and The Department of Research and Innovation, Helse-Fonna, Haugesund, Norway. We are collaborating with the Department of Informatics at the University of Bergen and Professor Morten Fjeld, The Western Norway University College and Associate Professor Ellen Svendsbø and Stavanger University Hospital by SESAM and WISEAGE (Professor Ingelin Testad) and industry partners. Our users including persons living with cognitive failure and their caregiver representatives and their organizations initiated the Public and Patient Involvement Program.

This project addresses eHealth in Dementia with Lewy Bodies (DLB), a multi-organ disease affecting the brain by impairing cognition, motor function and by major psychiatric symptoms like visual hallucinations and delusions. DLB is affecting the peripheral autonomous nervous system reducing the heart rate variability and blood pressure control. DLB is highly prevalent with 15000 persons affected in Norway alone, progressing fast to end stage dementia and death with no approved treatment. Here we focus on improving diagnostics and treatment of DLB by including new eHealth solutions with wearables. This project builds on the fully funded ANeED Study, a National Norwegian Clinical Intervention Study testing the repurposed drug Ambroxol in DLB by adding research on wearables as digital bio-signatures for diagnosis, prognosis and drug effects, exploring user experience of wearables and possibilities of preventing falls, fainting and drug non-compliance. We are collaborating with the department of informatics at the University of Bergen and with ATEA and Apple Norway, both non-research organizations, providing important equipment and knowhow to this project. We have completed first phase development of our digital “app” for smartphones in the ANeED Study to improve drug compliance and the reporting of side effects from Ambroxol. This project will be highly interdisciplinary involving both medicine and informatics university departments. Our users including persons living with cognitive failure and their caregiver representatives and their organizations initiated the Public and Patient Involvement Program. Wearable devices enabling patients health and wellness will be instrumented to further enhance user-acceptance among patients living with DLB and their caretakers.

Funding scheme:

BEHANDLING-God og treffsikker diagnostikk, behandling og rehabilitering