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How Do I Join the LISTEN Study? Your FAQs

How Do I Join the LISTEN Study? Your FAQs

Why should I join LISTEN?  

By joining LISTEN, you’re helping people worldwide facing challenges with COVID, long COVID, or the vaccine. Being part of the research team will provide insight into your first-hand experiences with COVID and/or the vaccine to help them pinpoint any patterns in disease occurrence (who, when, where) and understand disease progression.  

Am I a good candidate for LISTEN?  

You’re a good candidate for this study if you have an interest in advancing medical research and if you’re:  

  • at least 18 years old  
  • fluent in English   
  • impacted by COVID  
  • living with long COVID  
  • experiencing post-vaccine injury   

What’s the project LISTEN approach? 

There are six steps to the project LISTEN approach: 

  1. Community first: Inform people in the Kindred community about the study. 
  2. Consent: Help those who are interested make an informed choice about joining. 
  3. Health data: Receive the health data produced by LISTEN participants in Kindred and prepare them for analysis.  
  4. Survey data: Receive the Kindred survey data produced by LISTEN participants.
  5. Biospecimen collection: Invite some people to provide blood and saliva, which will be used to conduct a detailed evaluation of immune system function and the presence of residual virus.
  6. Analytics and results sharing: Analyze data and produce results to share with participants and then the public.

How do I join LISTEN?

You can enroll in the LISTEN study here

What will be expected of me during the study?  

It’s simple! After enrolling in the study, you’ll continue to fill out Kindred surveys about how you’re feeling and keep your health portal connections up to date. You may get reminders from the researchers and the Kindred team to do this because your data contributions will help the study team learn faster and better.  

What does LISTEN stand for? 

Listen to Immune Symptom and Treatment Experiences Now.  

The study was named LISTEN to convey the researchers’ commitment to bringing forth the experiences and voices of the participants and to acknowledge the wisdom that resides among those facing health challenges.  

How long is the study expected to last?   

The study could last three or more years, depending on the discoveries made. The longer people can contribute, the more that can be learned.  

You’re free to leave the study at any time. If you withdraw from the study, you’ll no longer be submitting new information, but information already collected will be retained and used.   

Is there a cost involved?  

There’s no cost for you to participate in this study.   

What do the Kindred Covid Assessment surveys have to do with LISTEN? 

There’s a lot of value in keeping a record of symptoms, health status, vaccine reactions, medications, mental health, etc.  

This set of surveys and any follow-ups you complete on Kindred are yours to share with researchers, clinicians, and other people of your choosing.  

Is the information I'm sharing with the study protected?  

Yes! LISTEN study investigators are bound by the federal law called the Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA). This means that strict protocols control any data you share from Kindred to protect all data, including keeping audit logs of everyone who’s accessed your data at Yale.

The researchers won’t be providing any information you share with healthcare providers or anyone else. The data will be confidential and won’t be part of your medical record.

Information from your medical record that's 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.

What does Institutional Review Board approval mean?

Under Food and Drug Administration (FDA) regulations, an Institutional Review Board (IRB) is a group formally designated to review and monitor biomedical research involving human subjects. Following FDA regulations, an IRB has the authority to approve, require modifications (to secure approval), or disapprove research.

Kindred will host only studies that an IRB has approved.

Who can I contact for more information on this study?  

If you have questions about this study, email Dr. Harlan Krumholz at listenstudy@yale.edu 

If you're ready to join LISTEN, you can enroll here

If you have questions regarding your health, contact your health provider.   

 

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Talia Aroshas

Talia Aroshas

Kindred Content and Community Manager

I’ve been working in health content as an editor since 2017. It's an honor to be able to provide people with resources that empower them to take an active role in their health journey. I believe in the body’s incredible ability to heal when given the necessary tools and presented with the appropriate environment. I’m thrilled to be on the Kindred team and to work with such a dedicated, passionate community.

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