Frequently Asked Questions

1. Why make an app?

2. Who developed the COVID Symptom Study app?

3. What is the aim of the research?

4. Who will be included in this study?

5. Who is funding this research?

6. I am an investigator of another ongoing study. How can I enroll my participants?

7. Is there a restriction on the type or size of study that can use the app?

8. What is the data flow for all information collected from the app?

9. How are data from the app linked back to study participants enrolled in other studies?

10. How will the data be protected?

11. Will sharing of data from other research studies be required for participation?

12. Do you have materials to assist investigators in getting local IRB approval?

13. Will the information collected in the app be used for commercial use?

14. There are other symptom trackers - are you taking steps to standardize and share data?

15. Will a web-based version of the app be launched for those without smartphones?

16. Will the app be available outside the U.S. and U.K.?

17. Can a new question of interest be added?

18. Are you working with other consortia?

19. Beyond data collected through the COVID Symptom Study app, will the COPE consortium expand to address other COVID-19 related research questions?

20. I am or my participants are having trouble finding the app in the Google Play Store or Apple App Store, where is it?

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Why make an app?

Symptoms of COVID-19 infection vary widely, with some individuals harboring infection without any clinical manifestations. Initial reports suggest that individuals living with cancer are more likely to acquire COVID-19 and experience more severe outcomes. However, there are a lack of data defining demographic, clinical, lifestyle, and molecular risk factors for COVID-19 infection and outcomes. Study cohorts collecting health data and biospecimens over long-term follow-up offer an ideal setting to address these questions. However, the speed of the pandemic, the short interval between exposure, symptoms, and clinical outcomes, and lack of widespread or systematic testing necessitate urgent implementation of a novel, rapidly adaptable platform that captures in real-time the spectrum of symptom onset, diagnosis, treatment, and clinical outcomes of COVID-19.

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Who developed the COVID Symptom Study app?

The COVID Symptom Study app was co-developed by physicians and epidemiologists at Massachusetts General Hospital, Harvard T.H. Chan School of Public Health, King’s College London, Guy’s and St.Thomas’s Hospital London, and Harvard Medical School with software engineers at Zoe Global Ltd., a health data science company.  The U.S. Principal Investigator is Andrew Chan, MD, MPH, Professor of Medicine at Harvard Medical School, Chief of the Clinical and Translational Epidemiology Unit at MGH and Director of Cancer Epidemiology at the MGH Cancer Center.

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What is the aim of the research?

A primary objective of this research is to identify risk factors for COVID-19 infection and to produce data on their clinical outcomes over the near- and long-term. This will offer real-time assessment on the spread of COVID-19, including the identification of new high-risk regions that may benefit from greater testing or hospital capacity. This information may be useful for rapid development and deployment of clinical care and diagnostic infrastructure to help those who need it most.

 

Other specific goals of this work include:

• An improved understanding of COVID-19 symptoms

• A comprehensive assessment of risk factors and predictors of subsequent outcomes. These include clinical data, lifestyle factors, and molecular correlates (e.g. genetic)

• A focus on the impact of the COVID-19 epidemic on health care workers and persons living with cancer

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Who will be included in this study?

The study will include individuals from the general public across the U.S. who have downloaded the COVID Symptom Study app through their smartphone app stores, as well as targeted enrollment of health care workers and individuals already actively participating in ongoing research studies, including the Nurses’ Health Study and clinical trials.

 

Our partners in the UK are enrolling from the UK general public and individuals enrolled in the UK Biobank and TwinsUK.

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Who is funding this research?

This research is currently supported through emergency UK government funds, the Wellcome Trust, discretionary funds from MGH, and in-kind effort donated by our industry partners. We are also actively seeking additional partners. If you are interested in supporting our efforts, please contact us at predict@mgh.harvard.edu.

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I am an investigator of another ongoing study. How can I enroll my participants?

The most efficient way to use the app to collect data in your study cohort would be to contact your participants, invite them to download the app.  Be sure you ask them to provide information that will allow linkage back to your parent study (see below).

 

Is there a restriction on the type or size of study that can use the app?

No. We invite studies of any size and composition with active participants, including observational cohorts and clinical trials.

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What is the data flow for all information collected from the app?

All data collected will be aggregated and de-identified by Zoe Global Ltd. and shared with the academic research team for analysis. All data will be used for public health planning, research and non-commercial purposes only. If a participant from a parent study or trial discloses that their membership in the parent study, he/she/they may offer permission to transmit their data to the investigators of the parent study. The parent study must identify a data manager and system to facilitate acceptance of the data.

 

How are data from the app linked back to study participants enrolled in other studies?

Parent studies should ask their participants to enter requested information into the app that will facilitate linkage, including the name of the cohort they belong to, email (specify the address used to connect with parent study), name, year of birth, and zip code.  This information is optional but necessary for linkage. 

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How will the data be protected? 

We have developed very strict data protection protocols compliant with the European Union’s “General Data Protection Regulation” (GDPR) and their U.S. equivalents as dictated by Individual Review Boards (IRB) and HIPAA regulations.

 

Will sharing of data from other research studies be required for participation? 

No. This is a one way flow of data from app to research studies. Participants of parent research studies that disclose their participation in those studies as well as provide data in the app can have that data linked to their parent research study. However, parent research studies will not be required to provide any previously collected data from their participants. In the future, members in the COPE consortium may decide to share data from their parent studies for collaborative studies.  

 

Do you have materials to assist investigators in getting local IRB approval?

We have developed a templated tool kit for investigators to assist in rapid IRB amendments. It has been uploaded above to this site for reference and use. Our team is happy to help navigate this process. Just email us at predict@mgh.harvard.edu. We will do our best to help you as quickly as possible.

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Will the information collected in this app be used for commercial use?

This is a not-for-profit initiative, and the data will not be used for commercial purposes. While ZOE Global Ltd is a commercial entity, this app was built in-kind to support ongoing coronavirus research efforts. The app is and always will be free-to-use.

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There are other symptom trackers - are you taking steps to standardize and share data?

Yes. We are working with researchers around the world, and the COVID Symptom Study app reflects input from multinational academic consortiums. We anticipate that the questions we ask will evolve rapidly as we learn more about the virus.

 

Will a web-based version of the app be launched for those without smartphones?

We are currently working on various alternatives to smartphone participation, including email or web-based versions. We are also exploring the possibility of surrogates being able to log information. Stay tuned for more information on this. 

 

Will the app be available outside the U.S. and U.K.?

We hope to release to other regions in the near future, based on an open-source approach. 

 

Can a new question of interest be added?

We are constantly reviewing the latest research and advice from our scientific and clinical partners. As time and effort allow, we will be happy to consider adding new questions of interest recognizing that we also want to keep it concise for our participants.

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Are you working with other consortia?

Yes. We recognize that there are many consortia that are forming around the world to address the COVID crisis. We are actively engaged in working with them to collaborate and synergize our efforts. If you are a part of such a consortium, please reach out.

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Beyond data collected through the COVID Symptom Study app, will the COPE consortium expand to address other COVID-19 related research questions?

The initial focus of COPE is to provide a tool to rapidly collect data on COVID-19 symptoms and some baseline risk factors to address an immediate public health priority.  We may also evolve to meet additional research needs and requests by participating cohorts.  For example, we recognize that additional data directly related to COVID-19 may be collected through separate efforts by participating cohort studies.  If there is interest in sharing questionnaire instruments, methodologies, or data generated by these additional efforts, we will develop an infrastructure to support such collaboration. Our initial goal was to rapidly address a time limited need.  However, if the consortium creates lasting value, cohorts will have the option to opt-in or out of any additional modules. 

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I am or my participants are having trouble finding the app in the Google Play Store or Apple App Store, where is it?

We are working with mobile app stores to be sure that the app is found using generic search terms; however, we are aware that this may not occur in some cases. We recommend sharing a direct link to the download pages.

For Apple: https://apps.apple.com/us/app/covid-symptom-tracker/id1503529611?ls=1

For Android/Google: https://play.google.com/store/apps/details?id=com.joinzoe.covid_zoe

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