Our Data

Overview

PROBE will use an analytics tool and visualization dashboard for PROBE study data allowing interactive selection of outcomes of interest. The data platform accommodates rapid update, a user-friendly interface and ease of presentation.  The PROBE dashboard was developed using Microsoft Power BI software, which includes a suite of business analytics tools.

The dashboard is divided into two main components - filters and graphs (visualization views). The visualization views provide graphic results for the selected outcome of interest (e.g., pain, independence, education, employment, family life, mobility, and current health status). Filters allow refinement of the data sample for demographic variables (e.g., region of the world, diagnoses, disease severity, inhibitor history, treatment regimen, age group and gender). Comparator data from those not personally affected by a bleeding disorder are also depicted. The graphs are interactive allowing comparison of outcomes using the demographic variables. The PROBE dashboard framework and analytics will be further refined through beta testing with the participating organizations.

The first 2100 questionnaires collected by 20 national patient organizations worldwide were used in development of the pilot PROBE dashboard. It is currently undergoing beta testing.  Launch of the dashboard is anticipated in Q3/4 of 2017.  The dashboard will allow participating organizations easy, secure and large-scale external as well as internal access to PROBE study data. Real-time updates permit viewing progress and fluctuations of the data for outcomes both within each country and cross-sectional across countries.

The Academic partner hosting the study database (McMaster University) obtained Review Ethical Board approval and Privacy Officer clearance for PROBE from the Hamilton Integrated Research Ethics Board.

 

Sample of the PROBE Dashboard.  (For illustration purposes only)

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