Please note that participation in this research study does not replace a medical evaluation. If you experience a medical emergency, you should go to your local emergency room.

Summary

The purpose of the project is to create a functional profile of people with post-COVID-19 syndrome to guide self-management and to prioritize people for more in-depth assessment.

Eligibility

Currently Recruiting Participants: Yes

  • Ages: 18 years and older
  • Residency: Residents of Quebec
  • Symptoms: Self-identify as currently having symptoms that are attributed to COVID-19 infection occurring 4 or more weeks in the past, with or without a positive test

The QAPC study is no longer recruiting new participants.

If you are already registered, please continue your participation so we can track how the Post-COVID Syndrome evolves.

Thank you for your continued participation.

The QAPC Team

If you join, we will assess:

Physical
Activity

Mental
Health

Well
Being

Memory &
Attention

We will give you:

An activity
Tracker App

A Personal Health
Dashboard

Self-management
Resources

Why Participate In Research?

We are inviting adult residents of Quebec, 18 years and older, who self-identify as currently having symptoms that they attribute to COVID-19 infection occurring more 4 or more weeks in the past, with or without a positive test. Before you decide to join, it is important that you understand why the research is being done and what it will involve.

  • QAPC is a large provincial study to create a functional profile of people with post-COVID-19 syndrome, also known as “Long COVID”.
  • You can ask the research coordinator if there is anything that is not clear, or if you would like more information.
  • Taking part is voluntary. If you don’t want to take part. then you don’t need to give a reason why.

Frequently Asked Questions

We ask that you answer all questionnaires as best as you can within the appropriate timeframe. It is important that you be the only person to answer the questionnaires. For those participating in the intensive monitoring (which is optional), you will be asked to download 2 apps on your cell phone, carry your cell phone with you when you leave the house and answer questions when prompted by the apps. The use of these apps is not mandatory to participate in this study.

No, participation in the study is voluntary. It is up to you to decide whether or not to take part. If you do decide to take part you will be asked to sign a consent form via the website. If you decide to take part, you are free to withdraw from the study at any time and without giving a reason. If you do not take part, or if you withdraw from the study, this will not affect the standard of care you receive.

During your participation in this study, the researcher in charge of the study and the QAPC team will collect in a study file the information about you needed to meet the scientific objectives of the study.

If you agree to join this study, you will be given a code to connect to “Quebec Action for Post-COVID” online survey, the HandHeld Monitoring and StepCatcher apps. The survey will be implemented on the REDCap platform, hosted on a secure server housed at the Montreal Neurological Institute. Online information collected on the platform are responses to the questionnaires and cognitive tests but no personal information (such as name, etc.). All information that is collected for the study will be kept in a secure and password protected file. Only the study team will be allowed to look at your information. You will not be recognized in any reports, publications, or presentations that may be generated from this study. Results of this project may be presented at meetings or in publications, but your name will not appear or information about you as a person.

Data for the HandHeld Monitoring application, identified by a unique code, will be managed and stored on a physical server located in Montreal. No personal information is collected from the app. Only the research team will be able to match the data to the rest of your study data using this code. The StepCatcherTM application will extract the data on step count from the health app already installed as a default app in all smart phones and automatically sends it to a server located in Montreal, Canada. Both servers follow the rules and regulations for data storage in North America.

We are interested in the characteristics of your neighbourhood as they may influence your activities. We will ask you to provide the first 3 characters of your postal code. It will not be possible to identify you or your residence with this information.

Your online data will be stored on a secure server. You will only be identified by a code number.

The link between your code and personal information will be recorded in a separate password protected electronic file and stored in a password protected computer located in a locked office of one of the research team.

Email addresses provided to the QAPC project are stored in a secure server and only be accessible by authorized members of the QAPC team. Your email will not be shared with anyone outside the QAPC team unless you give us permission.

The study data will be stored for 7 years by the researcher responsible for the study. After that, anonymized data will be stored on an open science platform as long as it is useful for research purposes.

The study data may be published or shared at scientific meetings; however, it will not be possible to identify you.

For auditing purposes, the research study files which could include documents that may identify you may be examined by a person mandated by the institution, or the Research Ethics Board. All these individuals and organizations will have access to your personal data, but they adhere to a confidentiality policy.

You may or may not personally benefit from your participation in this research project. However, we hope that the study results will contribute to the advancement of scientific knowledge in the study field and help us find better treatments for patients.

Participation in this study involves the use of two apps, The use of the apps is not mandatory to participate in the study. The use of these apps involves the sharing of information about you. Please be advised that assessing the risk to privacy involved in using 3rd party apps is not part of the MUHC research ethics board’s mandate. You must make sure that you understand the impact using this service will have on your privacy. If you would like more information, please further discuss it with the research team.

Data for the apps, identified by a unique code, will be managed and stored on a physical server located in Montreal. No personal information is collected from the app. Only the research team will be able to match the data on the app with the rest of your study data using your study code. The apps will extract the data on step count from the health app already installed as a default app in all smart phones and automatically sends it to a server located in Montreal, Canada. Both servers follow the rules and regulations for data storage in North America.

A possible risk associated with this study is a breach of confidentiality or the use of your personal information by a third party. To limit this risk, we will take several steps to protect your confidentiality.

We do not foresee any other risks associated with this study.

The questionnaires and computerized cognitive tests may take up to 30 minutes of your time every 3 months. The only anticipated inconveniences linked to the study procedures are the time it will take to complete them.

Your participation in this study is voluntary. Therefore, you may refuse to participate. You may also withdraw from the ongoing project at any time, without giving any reason, by informing a member of the study team.

Your decision not to participate in the study, or to withdraw from it, will have no impact on the quality of care and services to which you are otherwise entitled.

The researcher or the Research Ethics Board may put an end to your participation without your consent. This may happen if new findings or information indicate that participation is no longer in your interest, if you do not follow study instructions, or if there are administrative reasons to terminate the project.

If you withdraw or are withdrawn from the study, you may also request that the data already collected about you be removed from the study. If you request that your data be removed and the information already collected about you can be identified as yours, it will be destroyed.

If you have any questions or desire further information about this study before or during participation, or if you experience any adverse effects, you can contact the Research Coordinator:

Email: post-covid.ri@muhc.mcgill.ca