Participant InformationAbout this study
This information is to help you decide whether this study is something you would like to join.
It will give you an overview of:
- why we are doing this study,
- what it involves you doing,
- the potential benefits and risks to you,
- how your information will be stored and used, and
- what happens at the end of the study.
If you have any additional questions or concerns after reading this information, please email email@example.com.
You are welcome to discuss this study with others, such as whānau, friends or a health professional, before deciding whether to proceed.
What is the purpose of the study?
Studies show that around 10–20% of people infected by COVID-19 may go on to develop long COVID. This means there may be some 200,000 individuals impacted by long COVID in Aotearoa New Zealand. With this research we will establish a long COVID registry. We hope this will help us to understand
- the burden of long COVID on patients, including learning more about symptoms,
- the impact of long COVID on quality of life,
- the different pathways and possible complications to receiving diagnosis and treatment,
- the impact of long COVID on work and caregiving,
- the cost of long COVID on individuals and our wider society,
- the distribution of this burden, and
- whether the impacts improve or worsen over time.
What is long COVID?
A clinical diagnosis is not required to identify as having long COVID, you can self-identify in this study as having long COVID symptoms. Perhaps you’re not sure? That’s ok too, we’d still like to understand your post COVID experience. You can find out more about long COVID and its symptoms here.
What is the study design?
Who are we?
Our project team is made up of researchers from the University of Auckland | Waipapa Taumata Rau and independent contractors.
- Professor Paula Lorgelly, Principal Investigator, University of Auckland | Waipapa Taumata Rau, email: firstname.lastname@example.org,
- Jenene Crossan (Ngāi Tahu), Co-Investigator who has lived experience of long COVID,
- Andrew McCullough, Research Assistant, University of Auckland | Waipapa Taumata Rau,
- Associate Professor Daniel Exeter, Named investigator, University of Auckland | Waipapa Taumata Rau.
The study is overseen by a Kaitiaki Rōpū (Advisory Group). The members of Te Rōpū Kaitiaki are:
- Witi Ashby (Ngāti Hine, Ngāti Kawa),
- Iris Pahau (Te Aupouri, Te Rarawa, Ngāti Kuri, Ngāti Awa),
- Mona Jeffreys,
- Ngapera Riley (Te Arawa, Ngāti Uenukukopako, Ngāti Rorooterangi, Ngāti Whakaue, Tūhourangi),
- Marianna Churchward (Lotofaga, Faleasiu, Samoa),
- Jenene Crossan (Ngāi Tahu),
- Andrew McCullough,
- Paula Lorgelly.
Who can take part?
I had long COVID in the past
Participation and withdrawal
Your participation in this research is completely voluntary and will not affect the care you receive. You do not have to give a reason for not wanting to participate. If you would like to participate, you are under no obligation to stay in the study and can withdraw your consent at any time during the study. Whether or not you decide to join us, we thank you for your time and consideration!
You can withdraw your consent by logging back into the registry and accessing the ‘Withdraw My Consent’ page on the registry dashboard. You may also telephone Professor Paula Lorgelly (09 373 7599 extn 89392) and ask to withdraw from the study. This will remove your data from the registry. If we have already undertaken analysis of the data you will not be able to withdraw from that, but your future preferences will be noted and your data will not be used in future analyses.
You may change your consent for the optional components of the study (signing up for other research and future data linkages – see below) by accessing the ‘My Data Preferences’ page on the registry dashboard and changing your previous responses to these consent questions.
What is involved?
You will first need to sign up using Google (you can use your Gmail), you will also have the opportunity to create a Google account if you do not already have one. Using Google to sign in does not provide Google with access to your data, it simply means your registry data are protected using a secure and encrypted authentication (login) method. You can leave the survey, come back, and log in to where you left off. This is explained on the Google Authentication page.
Next you will be asked to consent to take part in the registry and different elements of data collection. This is explained on the consent page.
Finally, you will be asked to fill in surveys which you can do online or by telephone (please contact us to take part by telephone). The types of questions in these surveys are related to your COVID-19 infection(s), use of health services, experience with long COVID and how long COVID has impacted your personal, social and work life. The surveys will appear on the registry dashboard within the website. We will email you reminders to complete surveys. You are free to choose which surveys you would like to complete and in what order.
At the completion of any survey (or exiting the survey if you need a rest) please remember to sign out of Google. If you do not log out of Google your previous survey responses may be accessible to the next user of the computer/device. To log out of Google click the link on the registry dashboard.
How long will it take?
Are there ongoing surveys?
How will my data be collected?
What are the benefits of taking part?
Are there any risks of taking part?
Will any costs I incur be reimbursed?
Where can I learn more about findings from the study?
How do you ensure my confidentiality?
How will my data be used in future research?
What are the benefits of using my data in future research?
Are there any risks to my data with future research?
What does data-linking mean and involve?
What are the benefits of data-linking?
Are there any risks with data-linking?
How are you ensuring tino rangatiratanga?
Māori data sovereignty is about protecting information or knowledge that is about (or comes from) Māori people. We recognise the taonga of the data collected for this study. To help protect this taonga and honouring the rights of Māori as an Indigenous community and treaty partners to exercise rangatiratanga over taonga Māori:
- We have worked in partnership with our Kaitiaki Rōpū about the collection, ownership, and use of study data.
- We will allow Māori organisations to access de-identified study data, for uses that may benefit Māori.
We will be guided by the Tāngata Whenua members of our Kaitiaki Rōpū with respect to interpreting our findings and disseminating our research outputs.
What about tikanga and data-linking?
Ngā Tikanga Paihere is a framework and tool used by Stats NZ that:
- guides safe, responsible, and culturally appropriate use of data,
- ensures data use is carefully considered, and
- ensures data practices occur in good faith.
The framework was designed to guide the appropriate use of microdata in the Stats NZ IDI, with a focus on how data about Māori and other under-represented sub-groups are used for research purposes. We will be using Ngā Tikanga Paihere to guide on how we can bring better insights to the registry and linked data, by building relationships with communities from whom the data originates.
Who is funding this study?
Who has approved this study?
Any other questions?
For help relating to the registry, there is a help and FAQ section here.
If you have any questions, concerns or complaints about the study at any stage, you can contact:
Prof Paula Lorgelly, Principal Investigator
09 373 7599 extn 89392
If you want to talk to someone who is not involved with the study, you can contact an independent health and disability advocate on:
You can also contact the health and disability ethics committee (HDEC) that approved this study on:
Phone: 0800 4 ETHIC (0800 4 38442)
More information about long COVID-19:
For whānau haua | people with a disability:
For Pacific peoples: