Data User Pathway
The ADVANCE study is a unique and world-leading cohort study originally conceived as a study of comparative prognosis over a period of 20 years after injury. A large quantity of information is being assembled across a wide spectrum of ‘outcomes’. This page outlines the process a new Data User will need to go through to begin a research project with us and access ADVANCE study data.
1 Understand the study
Our About Us page is a great place to start learning about the study and how we operate. More information on the details of the study parameters, governance structure, data collected, etc can be found throughout the website. You can also follow us for all the latest ADVANCE news:
2 Explore the Longitudinal Data Plan
If the study structure and remit sounds interesting to you consider the Longitudinal Data Plan next. Explore what broad categories of data we collect during a participant’s visit day, and how frequently these data points are collected.
View our Longitudinal Data Plan3 Investigate the specific variables
Assuming the high level data categories are relevant to you, and the data are available with high enough frequency, we suggest you explore what specific variables are collected on those topics. Our Variable Search tool helps you find the exact variables that will help you with your research. Although you won’t need to select each variable you want to work with individually, its good practice to review what is available and consider the necessity of variables within a theme so that you can effectively apply the principle of data minimisation when you complete your application later.
View Variables Data4 Consider your research question
Each project application is reviewed by our Project Board and multiple overlapping projects are heavily discouraged. Therefore as you consider your project hypothesis take some time to review previously approved project applications and consider how your work may support, strengthen, or interact with these existing research areas.
View Project Applications5 Starting an application
If you are confident you have a project idea that would be an appropriate and an ethical use of the study data based on a strong, hypothesis driven, academic question then please get in touch with us! Our Data Team can then talk you through the next steps.
Contact our Data Team6 Complete a Data Request Form (DRF)
You will be provided with a link to our structured online application form, a DRF. All DRFs are reviewed by the Project Board and either approved, or feedback is provided to the applicant. All forms must detail how you and your project fit the five safes principles, and be signed off by both the Primary Data User and a PI or Manager.
7 Receive ADVANCE study data
After approval you will receive ADVANCE study data from the Data Team and can start your project! If you have any questions about how to handle the data you receive you can reach out the Data Team who are able to help with basic syntax suggestions, training course recommendations, and FAQ answers.
8 Publish your world leading research
We love to see ADVANCE data turning into published work. See our publications library here:
View our Publications