A research project led by the University of Auckland is building a long-COVID registry that will for the first time gauge the burden of the illness in New Zealand.

WHAT IT'S ABOUT

Based on a media release, a survey will ask people for confidential information about their experiences relating to long COVID, a condition characterised by persistent symptoms that last for weeks or months following a COVID-19 infection. 

Participants will also be guided through the survey covering topics such as demographics, symptoms and their duration, vaccine status, impacts on employment or ability to carry out caring duties, expenses involved, and impacts on whānau.

The researchers assure that they will maintain participants' privacy and practice culturally safe data sovereignty. They will also ask participants for various levels of consent relating to the use of their data and whether they are willing to participate again in the research in the future.

WHY IT MATTERS

Reviews of existing studies showed that between 10%-20% of people infected by COVID-19 go on to develop long COVID. 

The research team hopes that the registry they are making in New Zealand will provide hard data on the number of people living with long COVID and their experience and thereby "facilitate meaningful support."

New Zealand has so far reported 2.4 million cases of COVID-19 since 2020 with over 3,000 deaths attributed to the disease.

THE LARGER TREND

In neighbouring country Australia, research has also been undertaken to get the full extent of the impact of long COVID on the population. The national COVID-19 linked data project by the Australian Institute of Health and Welfare is also investigating the health outcomes post-COVID-19 infection. Clinics providing specialised care for patients with long COVID have also been set up. 

Melbourne-based non-profit Emerge Australia has recently expanded its Australian ME/CFS Biobank and Registry to also collect data and biosamples from people with long-COVID symptoms. 

ON THE RECORD

"Our aim is to show that the disability that comes with persistent illness impacts everyone beyond the individual - from community to whānau and our economy. We can’t pretend it doesn’t exist, it does. It is destroying lives, disadvantaging people, disrupting businesses, fracturing families and even if people are ‘bored of COVID’ and want to move on, it’s going to keep taking until we say ‘enough is enough," said Jenene Crossan, co-research investigator and a person with lived experience of long COVID.