Setting and participants
Conclusions and implications
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This work was supported by the Netherlands Organisation for Health Research and Development (ZonMw) under grant agreement No. 733050403; and the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No. 116020.
Data were collected within the ‘Identifying BESt practices In DEmentia care’ (BESIDE) study, which aimed to identify and characterize best practices in care trajectories of community‒dwelling persons with dementia and their family caregivers. The present study was conducted in collaboration with the Real‒World Outcomes across the Alzheimer's disease spectrum for better care: Multi‒modal data Access Platform (ROADMAP) project, which aimed to identify and use relevant outcomes and data sources across the Alzheimer's disease spectrum to create a disease progression model (38).
All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare: no financial relationships with any organizations that might have an interest in the submitted work in the previous 3 years; no other relationships or activities that could appear to have influenced the submitted work. OJ received through her institution research support from Biogen and the Innovative Medicines Initiatives. SV received research support from ZonMw, Alzheimer Nederland, and the Innovative Medicines Initiatives during the conduct of this study. RH reports the following outside this study: consulting fees from Piramal, Roche and Eisai; grants from Horizon 2020, JPND Joint Programing Neurodegenerative Disease Research, IMI Innovative Medicines Initiative, and national, European and patient charity funding organizations and private‒public collaborations (ZonMw Netherlands; Alzheimer Netherlands; Dutch Flutemetamol Study; Alzheimer Research UK; Swedish National study on Aging and Care; European Brain Council). LV received through her institution research support from Alzheimer Nederland, European Brain Council, and the Innovative Medicines Intiatives. PV reports grants from Innovative Medicine Initiatives and grants from ZonMw during the conduct of the study, nonfinancial support from GE Healthcare, and grants from Biogen, outside the submitted work.
The lead author affirms that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.
The ethics committee of the VU University Medical Center confirmed that the Medical Research Involving Human Subjects Act (WMO) does not apply to the BESIDE study, therefore official approval was not required. Data provided by NIVEL were pseudonymized at each general practice site, and patients were informed about the use of their pseudonymised record data and given the opportunity to object. Data provided by Statistics Netherlands was anonymized. Since these data were recorded for routine administrative purposes no informed consent of the persons included in this database was obtained. The Personal Data Protection Act and the Act on Statistics Netherlands allow for the use of registry data for scientific purposes. This study has been approved according to the governance code of Nivel Primary Care Database, under number NZR‒00315.063.
The BESIDE study has obtained funding from the Netherlands Organisation for Health Research and Development (ZonMw) under grant agreement No. 733050403 (“Identifying best practices in care trajectories of community‒dwelling persons with dementia. A comparison of care trajectories, quality indicators and costs extracted from routine care registrations and health insurance data”). The ROADMAP project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No. 116020 (“ROADMAP”). This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA. It is also supported by the Medical Research Council Dementias Platform UK (MR/L023784/1 and MR/009076/1). The researchers confirm independence from funding sources and all authors had full access to all of the data in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.
Access to the data sources used in this study can be applied for through the Nivel Primary Care Database and Statistics Netherlands governance bodies.