Dr Stewart Morrison
Dr Morrison’s registry of cases where children with rare medical conditions have undergone limb reconstruction to improve their movement will help inform future research.
Dr Morrison is applying the opportunity as a Bob Dickens Research Fellow to compile the registry, which will collect patient outcomes and improve understanding of how surgery can benefit these children.
“We need to listen to patients and families about their treatment experience,” Dr Morrison says. "Is their child walking better? Do they have less pain? And can they do all the things that they want to do?”
Dr Morrison completed a comprehensive literature review to ensure the data collected are robust. He hopes to accumulate data on 30 to 40 cases within five years, and publish the protocol and database structure so further institutions may adopt it both nationally and internationally.
“Papers very rarely publish enough information to reproduce their database, so every new institution is starting from scratch,” Dr Morrison explains. “We thought we could provide a template so other institutions could collect similar data points for these specific rare conditions.”
The registry will use the secure REDCap online database platform. Once established, it will save fellow researchers hundreds of hours that would have been spent manually reviewing patient charts.
“Once the initial dataset is established, it will provide trainees and PhD students with a resource they can go to, with the right privacy restrictions and considerations,” Dr Morrison says.