Patient Engagement: The Fundació ACE Framework for Improving Recruitment and Retention in Alzheimer’s Disease Research

作者: Agustín Ruiz , Lluís Tárraga , Mercè Boada , Miguel A. Santos-Santos , Octavio Rodríguez-Gómez

DOI: 10.3233/JAD-170866

关键词: Multinational corporationPsychologyDiseaseGeneral partnershipClinical trialPsychological interventionContext (language use)Global citizenshipMedical educationPopulation

摘要: Alzheimer's disease (AD) research is at a critical time. The global society increasingly aware of the frightening rate growth human and financial burden caused by this condition urgent need to halt its progression. Consequently, scientific community holds great responsibility quickly put in place optimize machinery necessary for testing new treatments or interventions. In context demand participants AD an all-time high. review, we will focus on methodological factor that recognized as key shapes trial populations affects validity results clinical trials: patient engagement, recruitment, retention. We outline specific problems relevant engagement including recruiting enough participants, difficulties participant retention, ensuring recruited sample representative general population, screening failures, challenges related preclinical disease. To address more studying applicability cost-effectiveness different recruitment strategies across settings nationalities, describe Models Patient Engagement Disease (MOPEAD) project, public-private partnership promoted Innovative Medicine Initiative (IMI), which provide large multinational quantitative analysis comparing innovative models. also discuss each problem draw experience Fundacio ACE argue focusing resources comprehensive centers offer coordinated social care participate basic research, effective efficient way implementing many discussed strategies.

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