Frequently Asked Questions

• Camera use: If your camera is on and/or your name is visible, your identity will be shown to others on the call.
• Confidentiality: Please respect the privacy of other participants and do not share their information.
• Invitation: This event is exclusive to LISTEN participants. Please do not share the invitation.
• Photography: To protect privacy, refrain from taking pictures during the Zoom call.

United States residents ages 18 or older are eligible for the study, whether you are living with long COVID, post-vaccine syndrome (PVS), or want to contribute to research as a control.

However, you will only be invited to give biospecimens if you live in the continental United States (we cannot get biospecimens from Alaska or Hawaii).

There is no financial cost to joining the study. You do not need to have insurance and there will be no billing or costs associated with participating in the study.

There is currently no payment for this study.

If you give blood and saliva samples, you will receive some results once the analyses are completed.

We will share key study findings with all participants as we have them. These findings will not include your personal data and will only show aggregated, deidentified results. You will also receive notification of scientific presentations and paper publications from the study.

We completely understand the frustration you are feeling if you are living with long COVID or PVS. However, as a research study, we cannot provide medical advice in any way.

We suggest searching online for long COVID clinics in your area or joining patient groups online to get peer advice.

We are not yet enrolling children. Currently, participants must be at least 18 years of age.

Yes. For this study, we are including people who have and have not received the COVID-19 vaccine.

Yes. We will include people regardless of testing status.

Yes, you are still eligible for the study.

Unfortunately, due to funding, we can invite only a sample of people from the study to give biospecimens.

We are sending invitations in a way to ensure representation from all groups that we need to study (i.e. by demographic factor, vaccination status, COVID-19 infection, long COVID symptoms).

We are sorry not to be able to include everyone at this time. We will expand the study as we gain funding.

There are no physical risks associated with this study. However, all research studies involve some risk to participant privacy: When you share your personal health information with researchers, there is a risk that someone might access that information improperly. However, the research team has strict protocols in place to control access to your data, including keeping audit logs of who has accessed your data at Yale.

Any information extracted from your medical record will also be kept on Yale secure servers. All email communication between you and our study team will be secure. All emails to participants will be sent from a Yale email address and will be encrypted.

Information collected from you for this study may be used for future research or shared with other researchers. If this happens, we will remove any information that could identify you before it is shared. Since identifying information will be removed, we will not ask you for additional consent.

The goal is to have as many scientists working on these data as possible to accelerate progress. The shared data will always be de-identified to protect your identity.

You have the right to leave a study at any time without penalty. We will not gather any new information after you leave the study. However, information we already collected will be retained and used as noted above.

Withdrawing from the study will involve no loss of benefits to which you are otherwise entitled or harm your relationship with your healthcare team.

The researchers have the right to stop your participation in this study without your consent if:

• they believe it is in your best interest
• you do not follow the instructions
• they cancel the study for any reason

Connecting your health data allows for the study team to receive real-time updates on your health, which is impossible to do if records need to be requested, faxed, emailed, or sent.

Additionally, sending emailing, or faxing records is not a secure method of transmission. Data that you send using Hugo Connect is encrypted so that even if it was intercepted, it would be impossible to decipher.

Hugo Health takes security very seriously and follows the federal law called the Privacy Rule of the Health and Insurance Portability and Accountability Act (HIPAA) and other entities including the Federal Trade Commission (FTC). Hugo Health is an approved member of the Creating Access to Real-Time Information Now Through Consumer-Directed Exchange (CARIN) Alliance, which has set the standard for patient privacy and security of health data.

Strict protocols control any data you share, including keeping audit logs of everyone who has accessed your data at Yale. The data you contribute to the LISTEN study will not be shared with healthcare providers, other research studies, or anything else without your explicit permission.

Information from your medical record that is used for the study will be kept on secure Yale servers. Additionally, all email communication to participants will be sent from a Yale address and specially coded to prevent unauthorized access.

In the spirit of open science, we may share de-identified data with other scientists to support further investigations, but this data would not have your name, or any other information that could be used to identify you.

Data is most vulnerable when it is moving between two different locations. To combat risk, Hugo Health encrypts your data while it is moving. In the rare instance it is intercepted, there is no way to turn it into information that makes sense, has any meaning, or can be tied back to you. They also encrypt data at rest (so, even when it is not moving).

The data you share with researchers is uploaded to an SFTP server, which stands for Secure File Transfer Protocol. This standard is used for many industry-related data types, including but not limited to health data.

While Hugo is not required to adhere to HIPAA standards, they follow the regulations required by HIPAA-covered entities.

1. Go to (the LISTEN website) click on the <link> “Connect with Hugo” button.

2. A pop-up welcome window will appear. Click “Continue.

7. Once you have closed that tab, you can then begin to search for healthcare systems, devices, or insurance providers to connect to.

8. Enter the name of the healthcare system, hospital, clinic, etc. in the search box and hit enter.

9. If you do not see what you are looking for, please review these search considerations for helpful tips.

10. The opportunity to enter your username and password connection should present itself immediately, either in the connection widget window or in a new tab.

• If a new tab does not open, and there is no place to enter your username and password, please disable your pop-up blocker.
• If a new tab opens, you will need to go through the authorization process via your provider’s patient portal.

11. After you finish the process, you should see a screen indicating you had a successful connection.

12. If you do not see a status indicating a successful connection, please see these troubleshooting steps to resolve the issue.

13. At any time, you can view your connections by clicking the link "Want to modify existing connections? Make Changes" at the bottom of the window.

14. If you have any other questions, please feel free to email us at listenstudy@yale.edu and we will be happy to help.

No, removing a connection will stop all data from updating in your account. However, if you would like to delete all data before this, you need to contact Hugo Health’s support team (support@hugo.health) and request that your data be deleted from your account.

You can delete your data and keep your account active or request that your account be deleted.

4. A second window will appear where you will confirm that you want to unlink the connection.

While the study recommends connecting your records, occasionally uploading files is necessary when a connection cannot be made.

1. Save the downloadable (.pdf, .doc, etc.) files from your provider’s portal to your computer or ask your provider to send you copies.

2. Click on "Add Data Connections.”

3. At the bottom of the list of example connections in the pop-up modal, select "Upload a New File."

Please note, uploading one at a time allows you to enter descriptive information about each one. Uploading multiple files is fine but requires that you describe them as if they are a single entity.

7. Provide a description for your file(s) and save.

8. You can view your uploads by clicking the link "Want to modify existing connections? Make Changes" at the bottom of the window.

If you do not see your provider listed as a connection, there are a few things you can do:

• Check their patient portal. Does it have a similar or different name listed? For example, "Michigan Medicine" is the health system for University of Michigan.
• Check to see if your location is part of a larger health system. The larger system may have a connection, and you can try connecting your records through their portal.
• Consider whether the provider may be listed by an acronym, or alternately, if you usually refer to them by an acronym, you might try entering the full name.
• Please note that Hugo Connect does not typically include individual providers and private practices. Instead, you are more likely to find larger clinics, hospitals, and health systems.

If your provider still is not showing up, please let us know at listenstudy@yale.edu. We will be happy to assist. If your provider needs to be added to Hugo Connect, we will make a request on your behalf to see if they can establish a connection.
Please be aware that this evaluation can take some time, and there is a waiting list that they are working through.
If you would like to share your data immediately, you can share files using the Hugo Connect file upload function.

If your connection is saying “Needs Attention,” it can easily be fixed by taking the following steps:

1. Use a supported browser (Firefox, Chrome, or Safari). Using a different browser or mobile device/tablet can cause functionality issues.
2. Go to your connections in the Hugo console.
3. Next to the name of your connection, click on the wrench icon.
4. From the small pop-up window, select “Manage” or “Repair Connection.”
5. On the next pop-up window, click the blue “Update” button.
6. You will either be prompted to enter your login credentials right away, or a new tab may open. If you do not see a place to enter your username and password, please disable any pop-up blockers.
7. If given the option, make sure that you grant access to all data for a minimum of 1 year. You can revoke access at any time.
8. At the end of the process, you should get a window that says, "You're all Set". If you do not see that, the connection was not successful.