Establishing the Spinal Cord Injury Program at the University of Technology Sydney

Sinead O’Reilly, the Research Manager of the Centre for Neuroscience and Regenerative Medicine in the Faculty of Science at UTS, commenced the Spinal Cord Injury Program led by Prof Bryce Vissel in 2019.  This program included a longitudinal clinical research study that required electronic capture of confidential patient information and the data from complex electrophysiological equipment.

At commencement of the project, it was identified that this study was likely to run over several years, so thorough preparations were needed. Initially, the following requirements were agreed upon by the UTS eResearch Team:

1. Secure data storage capacity of 5 TB

2. Secure electronic data collection system that can be approved by UTS Ethics for:

  • Compliant ongoing patient record management
  • Compliant management of the flow of the trial in terms of documentation
  • Document Control of procedures, risk assessments, manuals, etc.
  • Compliance with Good Clinical Practice Guidelines and other Quality Assurance guidelines

3. Engagement with the relevant staff members to build familiarity with the chosen data collection system

The Intersect contribution to the project has been three-fold: 

1. Recommending the REDCap system

Weisi Chen, the Intersect eResearch Analyst at UTS recommended REDCap as the electronic system best placed to meet the research needs of the Program. REDCap is a secure web application for building and managing online surveys and databases that supports multi-centre clinical trials with appropriate security/audit trail features.

The UTS REDCap instance is hosted on an Intersect server on Nectar. Since December 2016, REDCap has gradually become an integral eResearch tool for UTS researchers. As of 25 August 2021, there are a total of 776 users and 997 projects. 

2. Training

Weisi has been running REDCap training from introductory to intermediate levels at UTS regularly since 2016. Sinead and some other team members have attended these training courses and benefitted from what was taught, so they could get started with REDCap easily.

3. Ongoing support

Weisi, together with Sharyn Wise from UTS eResearch, provided suggestions on the ethics application. Sinead has been working with Weisi regularly over a period of two years since the start of the project in 2019 for assistance on various topics, including the design of data collection forms, the best use of certain REDCap features, tips for managing longitudinal studies, etc. The ongoing support was provided via individual or group consultation meetings, phone calls, emails, and the UTS Research IT Drop-in Session (formerly known as Hacky Hour). This has facilitated an efficient process of building the forms and a smooth commencement of the project.

As a result, the use of REDCap, along with the training and support provided by the Intersect eResearch Analysts, Weisi Chen, has been a crucial component of the Spinal Cord Injury Program from commencement through to its cessation in early 2021. Furthermore, the establishment of the UTS REDCap instance, and the procedural design for interacting with ethics approvals, provide a foundation whereby the  UTS eResearch team can provide ongoing assistance and support to other REDCap users at UTS.

“Weisi was extremely helpful explaining the REDCap options available to us to meet our needs, and spent a significant amount of time supporting us with this project through the design, development and testing phases.  We could not have done this work without Weisi.” Sinead O’Reilly said.

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