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Researchers from The Faculty of Medical and Health Science, Auckland University in New Zealand, have launched a long-COVID registry to accurately picture an accurate picture of the burden of debilitating illness in Aotearoa, New Zealand. This newly launched registry aims to quantify the burden of long COVID in New Zealand.
The researchers expressed that the Mātauranga Raranga registry is now available at lcregistry.auckland.ac.nz. By harnessing this innovation, they will collect the data from respective individuals by filling out this form.
This registry would serve as a centralised database containing relevant health information and tracking the long-term effects of the virus on patients. The data is used to generate accurate reports on the condition.
“The registry will be the first time Aotearoa researchers will be able to quantify the broad burden of long COVID,” said Lead Investigator Dr Paula Lorgelly, a Professor in Health Economics.
Participants, who may or may not have a formal diagnosis, will be guided through a survey covering demographics, symptoms and their duration, vaccine status, impacts on employment or ability to carry out caring duties, expenses involved, and impacts on whānau (family).
In addition to the research efforts, researchers offer support for individuals uncertain about their symptoms through the website longcovidsupport.co.nz. This platform is a valuable resource where people can access information and guidance related to long COVID. One of the features on the website is an interactive quiz designed to assist individuals in assessing their symptoms and better understanding whether they might be experiencing long COVID.
Encouraging individuals to participate in the quiz aims to provide them with a preliminary assessment of their symptoms and help them determine if they may be dealing with long COVID. It empowers individuals with valuable knowledge and supports them in seeking appropriate medical advice and support.
Furthermore, the University of Auckland’s Waipapa Taumata Rau is leading the research project in collaboration with Jenene Crossan, who has personal experience with long COVID. A crucial aspect of the study is examining how deprivation affects individuals’ experiences with long COVID.
Ms Crossan believes the registry will offer concrete data on the prevalence of this debilitating disease and people’s experiences, ultimately leading to more effective support measures.
The primary objective of this is to highlight that the disabling effects of persistent illness extend beyond the individual and impact the wider community, whānau , and economy, because it cannot ignore the existence of long COVID, as it devastates lives, creates disadvantages, disrupts businesses, and fractures families.
Researchers said that now is the time to establish support services and address the needs of those affected by long COVID. The crucial first step is actively listening to their experiences and perspectives. Additionally, a governance group, a Rōpū Kaitiaki, oversees the research to ensure privacy and respect cultural practices.
Moreover, the researchers will uphold data sovereignty that is culturally safe and safeguards participants’ privacy. During the process, participants can provide consent at various levels regarding using their data and potential participation in future research endeavours.
“Because of our project’s utilisation of technology, we place significant emphasis on ensuring the secure and proper handling of patients’ data,” explained Dr Paula.