Data Resource Profile: The Dementias Platform UK (DPUK) Data Portal

Resource Basics: The DPUK Portal (https://portal.dementiasplatform.uk/) is a resource to support the work of cohort research teams and analysts through the curation, storage, and access management of data. Upon approval by cohort research teams, data can be made available within a secure analysis area to third party researchers on a per-project basis for in-situ analysis. cannot be downloaded to third party sites. Data collected: are accessible for 35 cohorts; 22 (n=1 399 082) have uploaded full or partial datasets and 13 (n=2 062 162) upload on a per-project basis. The datasets are diverse with multi-modal data from clinical and population cohorts. Data resource use: From launch in November 2017 to February 2019, 81 data access requests have been received involving 149 applicants in nine countries; 51 requests involved multiple cohorts and included Mendelian randomisation, imaging, psychometric, and machine learning studies. Strengths and weaknesses: The Portal obviates the need for repeated data transfer, provides a single point of access for multiple cohort datasets, standard access procedures, use of a common data model, a secure analysis environment, and a process that is auditable from data upload to results export. Challenges include meeting the data access needs and expectations of epidemiologic, imaging, genetics, and data science communities, each with different conventions over what constitutes an appropriate data request. Data resource access: Registered researchers complete a data access application form and submit it for review by the cohort research teams. Currently the median decision period is 25 days. Upon approval, completion by the applicant of a data access agreement is required prior to access being granted.