ACCQUIREnet

When Are Data Collected?

For the purpose of benchmarking and comparing outcomes, ACCQUIREnet encourages data acquisition at ages 3yo, 5yo, 8yo, 12yo, 15yo, and at the end of treatment. Other important time points are before and after important operative procedures. The CleftCap project template makes it clear which outcomes are measured at each time point.

Who Collects the Data?

Some outcomes are measured by clinicians; others are reported by guardians (e.g., ICS) and patients (e.g., CLEFT-Q™ and FACE-Q™). Each site has formalized a workflow designating how the measurements are recorded in REDCap®. For clinical outcome measures, some sites have clinicians doing so themselves, some sites have the team coordinator entering the data, and some sites utilize research coordinators.

How Are the Data Stored, Transferred, and Utilized?

The diagram below depicts how each participating team collects and stores data, how those data are transferred to the statistical support center, and how the data are analyzed. Click the image for a larger version.

Who Controls the Data?

Since ACCQUIREnet is a distributed data network, each participating team remains in full control of its own data. There is no lock-in: every team director has the ability to export and download that site’s data at any point in time. Each participating site is allowed to analyze its own data in any way it deems fit (in accordance with the IRB protocol).

What About Authorship?

The core tenet of ACCQUIREnet is collaboration, not competition. Presently, we propose that any participant can propose and lead a scientific inquiry and may be first or senior author on any academic publication that results from that work. The core research team and statistical support team at Duke will also be named authors on the papers, as will any other collaborators who meet the ICMJE criteria for authorship.