Lead Researcher: Professor Allison Tong, University of Sydney
Early in the pandemic, a research team in Australia conducted a global study to see what different groups of people wanted to see measured in COVID-19 clinical trials. These groups include patients, the general public, health professionals and researchers.A core outcome set is a list of things which experts have suggested that researchers should measure in a research study on a particular topic. Agreeing core outcomes encourages researchers to measure similar things across studies, which in turn helps to compare research, giving a bigger picture. The team were keen to involve people who had either experienced COVID-19 or were shielding or vulnerable to COVID-19.
Overall, 9,289 people from 111 countries took part in the international survey and 141 from 21 countries in the workshops. Participants were split roughly 50/50 between health professionals/researchers and patients, carers and public. We supported people to get involved in this project, and 10 people with Crohn’s or Colitis from the UK took part. The study identified five important results that the researchers would like to see reported in all coronavirus clinical trials. These were: deaths, respiratory (breathing) failure, multiple organ failure, shortness of breath, and recovery.
The focus throughout the pandemic has been on saving lives and preventing life-threatening complications, which is why recording deaths, respiratory (breathing) failure, multiple organ failure, was prioritised and agreed. The other outcomes aimed to address long-term effects of coronavirus and the burden on hospitals. Within the recovery outcome, the impact on families, and wellbeing was also noted. This means that in all clinical trials for coronavirus, researchers are looking at these five main areas.
For more details on the study and the results, please view their research paper.