A number of databases exist with relevant data for health-economics in Alzheimer’s disease and related disorders. Much data is available upon request by following the individual study’s data application regulations. Here we provide a non-exhaustive overview. You can contact us for more information or a data request. We will put effort in forwarding your request to the person representing this data within our network.
Combined database using various source studies such as the LEARN, 4C-MCI and 4C-dementia study. Participants were included on their first visit to a memory clinic and who were suspected of a cognitive disorder in 4 memory clinic setting in the Netherlands (MUMC+, VUmc, radboudUMC, LUMC). Data on resource use, quality of life and disease severity was obtained from 710 persons with subjective complaints, mild cognitive impairment and dementia, and their proxies between 2008 and 2014 and, in part of them, 2 year follow-up.
Population: n=710; Netherlands; first visit to memory clinic; MMSE>10.
Follow-up up to 3 years.
230 patients with SMC, MCI and dementia were recruited from memory clinics for a cost-effectiveness study at the Maastricht University Medical Centre+ between 2002 and 2004 and followed up 1 year. Participants were included if they were 55 years or older, Disease severity, quality of life and care resource use was measured.
Population: n=230; Netherlands; suspicion of dementia or cognitive disorder; first visit service; any level of disease severity.
Follow-up up to 1 year.
More information: www.ncbi.nlm.nih.gov/pubmed/19255381
“In 1999 the Swedish Ministry for Social Affairs promoted and supported a national project aimed at monitoring and evaluating the care-of-the-elderly system in Sweden. To achieve these aims, four longitudinal individual-based data collection describing the aging process and encompassing the care system as whole, has been initiated. This project was named The Swedish National study on Aging and Care (SNAC).” [www.snac-k.se]
Population: Sweden; general population.
More information: www.snac-k.se
Kungsholmen project Nordanstig
Twin project of the Swedish Kungsholmen project of the Karolinska Institutet in which 923 persons aged 75 years and older from the general population were included in 1998 to 2001 in this longitudinal cohort study. Data on resource use, quality of life and disease severity was obtained.
Population: n=923; Sweden; general population.
More information: www.kungsholmenproject.se/docs/research.htm#nord
Prospective, naturalistic observational study conducted in specialised memory clinics in 12 European countries. In total, 1385 patients diagnosed with Alzheimer’s disease were enrolled at baseline and followed up for a 2-year period with 6-monthly patient reviews.
Population: n=1208; MMSE score between 10 and 26; diagnosis of AD
More information: http://www.ncbi.nlm.nih.gov/pubmed/20922341
1222 patient and caregiver pairs residing in the community or in residential care settings in Spain, Sweden, United Kingdom, and the United States. Assessments included costs of care, cognitive function, ability to perform Activities of Daily Living, and behavioral symptoms.
Population: n=1222; Spain, Sweden, United Kingdom, and the United States; community or residential care setting; mainly specialist clinics and some primary care centers and general practices; patients with a clinical diagnosis of possible or probable AD disease with or without vascular elements
More information: http://www.ncbi.nlm.nih.gov/pubmed/21575872
Clinical trial sample
“Data from two 18 months, multicenter, randomized, double-blind, placebo-controlled, parallel-group twin trials of a putative disease modifier in Alzheimer’s disease (AD), and their double-blind 24 months extension trials, were retrieved and merged for studying resource utilization patterns of AD patients in an RCT setting.”
Population: n=2744; Australia, France, Hong Kong, Italy, the Netherlands, New Zealand, Singapore, South Africa, Spain, Taiwan, Canada, and the United States; clinical diagnosis of AD; Mini-Mental State Examination between 16 and 26; community-living at baseline.
More information: http://www.ncbi.nlm.nih.gov/pubmed/21784355
Scandinavian cost-of-illness study
272 patients with clinical diagnosis of dementia were recruited from memory clinics in Sweden, Denmark, Finland and Norway. Participants were followed up at 6 and 12 months at which disease severity, resource use and quality of life was measured.
Population: Sweden, Denmark, Finland and Norway; clinical diagnosis of AD; mild, moderate and severe disease severity.
More information: http://www.ncbi.nlm.nih.gov/pubmed/16676288
The GERAS study included 1497 community-dwelling patients with probable AD mainly from memory clinics between 2010 and 2011 in France, Germany, and the UK. The study aimed at determining resource use and total costs associated with AD. Resource use information and time spent on informal care was obtained using the Resource Utilization in Dementia instrument at baseline. Currently the participants are being followed-up at 6, 12, and 18 months.
Population: France, Germany and UK; mainly memory clinic; probable AD.
More information: http://www.ncbi.nlm.nih.gov/pubmed/23629588