Identifying Digital Endpoints to Assess Fatigue, Sleep and Activities of Daily Living in Neurodegenerative Disorders and Immune-mediated Inflammatory Diseases

Research summary

For patients with chronic diseases such as neurodegenerative disorders and immune-mediated inflammatory diseases, a key attribute for any successful therapeutic intervention is its ability to improve the patients’ activities of daily living (ADL) and health-related quality of life (HRQoL). Current evaluations of ADL and HRQoL rely mainly on subjective reports, typically using standardized questionnaires provided by patients every few months. The approach is often prone to recall bias, reliability issues and poor sensitivity to change. 

IDEA-FAST aims to identify, profile and validate digital solutions based on mobile or residential technology for remote assessment of fatigue and sleep disturbances that could effectively be used as digital endpoints in assessments for Parkinson’s Disease and Huntington’s Disease. This is in addition to immune-mediated inflammatory diseases, such as Rheumatoid Arthritis, Systemic Lupus Erythematosus, Primary Sjögren’s Syndrome, and Inflammatory Bowel Disease. Identifying digital endpoints for fatigue and sleep disturbances that can be used in patients’ usual living environment will also enable the meaningful evaluation of impacts of these symptoms on ADL/HRQoL. The ecological validity of these digital endpoints will be tested using a large longitudinal cohort of four IMID and two NDD

Funders and sponsors

Funders: Horizon 2020

Sponsor: University of Newcastle Upon Tyne

Consortium: University of Newcastle Upon Tyne, Universitätsklinikum Schleswig-HolsteinUniversita Degli Studi di BresciaErasmus Universitair Medisch Centrum RotterdamUniversity of GlasgowUniversity of LimerickECRIN European Clinical Research Infrastructure NetworkQueen Mary University of LondonImperial College of Science Technology and MedicineByteflies NVDREEMUniversity of CambridgeLixoft SASAsociación Parkinson MadridStichting MLC FoundationTMF – Technologie und Methodenplattform für die Vernetzte Medizinische Forschung e.V.Medibiosense Ltdempirica Gesellschaft für Kommunikations und Technologieforschung MbhFCiências.ID – Associação para a Investigação e Desenvolvimento de CiênciasPluribus One S.r.l., instituto de Medicina Molecular Joao Lobo AntunesTeknologian tutkimuskeskus VTT OyCambridge Cognition LtdUniversidad Autonoma de MadridInstitut Mines-TélécomMcRoberts BVGeorge-Huntington-Institut GmbHInstytut Psychiatrii I NeurologiiMedizinische Universität InnsbruckHelse Stavanger HfiXscient LtdEuropean Federation of Crohn’s & Ulcerative Colitis AssociationAcademisch Ziekenhuis LeidenUniversity of ManchesterJanssen PharmaceuticaTakeda Development Centre Europe LtdAbbvie IncAstraZeneca ABEli Lilly & Co. LtdParkinson’s Disease Society of the United KingdomPfizer LtdF. Hoffmann-La Roche AGSanofi Aventis Recherche et DéveloppementUCB Biopharma SPRLBiogen IDEC LtdOrion OYJCHDI Foundation

Chief investigator

Prof Wan-Fai Ng