• K R Jongsma, R L van Bruchem-Visser, S van de Vathorst, and F U S Mattace Raso.
• Department of Medical Ethics and Philosophy of Medicine, Erasmus Medical Centre, Rotterdam, the Netherlands.
• Neth J Med. 2016 Jun 1; 74 (5): 201-9.

Background/ObjectivesA substantial proportion of dementia patients are excluded from research participation, while for extrapolation of the study findings, it is important that the research population represents the patient population. The aim of this study is to provide an analysis of dementia research and its exclusion criteria in order to get a clearer picture whether the research participants represent the general dementia population.MethodsDementia studies registered at ToetsingOnline.nl between 2006-2015 were analysed. Study characteristics, funding and eligibility criteria were described and analysed using a standardised score sheet.ResultsThe search yielded 103 usable study protocols. The number of trials has increased over the years, and 35% of the studies were industry-financed. Alzheimer's disease was the most researched type of dementia (84%). In observational studies the most frequently observed exclusion criterion is a neurological condition, while in drug studies and other intervention studies this is a somatic condition. Of all protocols, 86% had at least one exclusion criterion concerning comorbidity. Most studies focused on mild or moderate dementia (78%).ConclusionOur study has shown that the distribution of dementia research over the different subtypes of dementia does not correspond with the prevalence of these subtypes in clinical practice. The research population in the protocols is not representative of the larger patient population. A greater number of dementia patients could derive benefit from the conducted research if the research agenda were more closely aligned with disease prevalence. A better representation of all dementia patients in research will help to meet the needs of these patients.

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