FAQs

Frequently Asked Questions

Coronavirus disease (COVID-19) is spreading rapidly throughout the world. ImmuneRACE is designed to better understand the immune response to COVID-19. This is critically important because the immune system may be able to tell us important information about how our own bodies detect and respond to the virus that currently available tests cannot. It may also be able to identify people who are at higher risk of developing more serious symptoms. De-identified data collected from this study will be shared with the global research community with the goal of working together to accelerate the development of better diagnostics, treatments, and vaccines for COVID-19 to combat the pandemic.

The ImmuneRACE study is part of our existing partnership with Microsoft to map population-wide adaptive immune responses to diseases at scale. To learn more about this partnership, click here.

ImmuneRACE is operating in the following metro areas: Atlanta, GA; Baltimore, MD; Baton Rouge, LA; Boston, MA; Dallas, TX;  Hartford, CT; Houston, TX; Indianapolis, IN; Kansas City, KS; Los Angeles, CA; Miami, FL; Nashville, TN; New Brunswick, NJ; New York, NY; Philadelphia, PA; Phoenix, AZ; Richmond, VA; Sacramento, CA; San Diego, CA; San Francisco, CA; Seattle, WA; Tampa, FL; Tyler, TX; Washington, DC.

If you are eligible to enroll and live within approximately 60 miles of those cities, we will make every effort to come to your house, resources permitting.

Given that local shelter in place restrictions may be in place in your location at this time, it is important that participants sign up only if they live in the specific coverage zone.  Please check back with this site if your shelter in place restrictions change, and do share information about ImmuneRACE with friends, family, or others you know who do live within a metro area in which we are operating.

Through the ImmuneRACE Study, we are looking for participants who have had either had significant exposure to someone with a confirmed clinical diagnosis or they themselves have a confirmed diagnosis.

A confirmed diagnosis can be obtained through two routes, either:
– Based on a positive test result that confirms COVID-19
– Diagnosis received from a healthcare provider

Recent, significant exposure is required for enrollment in the study, which likely means you had to go on quarantine or were told to quarantine by an official or healthcare provider.

Examples of significant exposure include, but are not limited to:
– Living with someone with a confirmed diagnosis
– Healthcare workers treating patients with COVID-19 without proper personal protective equipment

If you have questions about whether you may qualify, please reach out to the study team at COVID19ImmuneResponse@adaptivebiotech.com

 

Your participation includes:

1. Electronic Questionnaire
You will take an electronic questionnaire during the study to collect information about your medical history, symptoms, exposure history, and medical information related to COVID-19 that will help us better analyze and understand your immune system data. This information will be stored with a code in place of your name. All information provided will be de-identified in accordance with HIPAA standards.

2. Your Study Visit
A mobile phlebotomist will work with you to schedule a visit to your house or location of your choice to collect samples for the study. During the visit, the phlebotomist will ask questions relating to your symptoms and diagnosis of coronavirus disease. The phlebotomist will also collect the following samples:

Blood Collection
Standard blood draws will be performed by inserting a needle into a vein in your arm (venipuncture). Whole blood will be collected in volumes of approximately 1-4 tablespoons.

Nose or Throat Swab
A nose or throat swab will be collected at the time of your blood draw.

Once you have completed all responses to the questionnaire and you have had both blood collection and nose or throat swab, you will receive a $50 electronic gift card for your participation via email within 1-2 weeks.

3. Optional Portion
You have the option of participating in up to four additional study visits throughout a 4-month time period. Completion of each visit includes both a blood draw and an electronic questionnaire about your symptoms and medical information relating to COVID-19. You can cancel your consent at any time. You can complete the ImmuneRACE study without participating in or consenting to additional blood draws and questionnaires. Each additional blood draw will be in volumes of approximately 1-4 tablespoons.

You will receive additional compensation of a $50 gift card for each optional visit that is completed, up to a total of four. Once the blood draw and questionnaire are completed, the gift card will be provided to you via email within 1-2 weeks following completion of your study visit.

4.  How do I upload my diagnostic test results? 

We ask that you provide us with the test results that diagnosed you with COVID-19. This test was either a nose or throat swab. It may have been called a “PCR” test. If you had any additional tests such as multiple swab tests or blood tests that were used to diagnose you with COVID-19 or antibody tests that demonstrated you had been exposed to COVID-19, please provide these as well.  

If you do not have the test results or prefer that we ask your provider for the records, please provide us with the name and contact information of the healthcare provider that ordered the test.  

The test results can be provided to the secure email or secure fax number listed below.  

Secure Fax Number (866) 623-4408  

Secure Email clinicalservices@adaptivebiotech.com  

Please put attention to: ImmuneRACE Study.

 

Physical risks associated with drawing blood, including: soreness at the site of puncture, bruising, and in rare cases, infection of the blood draw site, fainting, nerve or tendon damage.

Physical risks associated with a nose or throat swab include: a very small risk of bleeding when swabbing the inside of your nose or throat (mucosal membranes).

We will not return individual results from this study. We will not give the results to your doctor or put them in your medical record.

Data from the ImmuneRACE study will be made freely available via an open access data portal to help solve this global public health crisis. These data will be de-identified accordantly to HIPAA standards. You will have access to the open access data portal.

You will not receive any direct benefits from being in this study.

Allowing the study team to analyze your samples may lead to a better scientific understanding of COVID-19. In addition, de-identified data from this study will be made freely available via an open access data portal to help solve this global public health crisis with the goal of accelerating the development better diagnostic tests, vaccines, and treatments. These data will be de-identified accordantly to HIPAA standards.

Neither you nor your insurance company will be billed for your participation in the ImmuneRACE study.

You will be given a $50 gift card for your participation in the ImmuneRACE study. You must complete the online questionnaire (all questions answered), nose or throat swab, and blood draw in order to qualify for the gift card.

If you choose to participate in the optional portion of the study after this initial study participation, you will be given an additional $50 gift card after completing each additional study visit, which includes a blood draw and electronic questionnaire (all questions answered).

Yes, you may withdraw (revoke) your permission to use and disclose your health information at any time. You do this by sending written notice to the study doctor at the address shown on page one. However, if you withdraw your permission for use and disclosure of your health information, you will not be able to stay in this study. Also, although withdrawing your permission will prevent further uses and disclosures of your health information, it will not invalidate uses and disclosures that have already been made at the time the permission is withdrawn. This permission will be good until December 31, 2060.
Every effort will be made to ensure confidentiality of Protected Health Information (PHI) in accordance with HIPAA. There is a risk that your information will be given to others without your permission.
Total confidentiality cannot be guaranteed but disclosures of your health information will be very limited, as described above. And, as mentioned, to the extent the results of this research study are presented at meetings or in publications, your identity will not be included in the information that is disclosed. Government agencies or staff sometimes reviews studies such as this one to make sure they are being done safely and legally. If a review of this study takes places, your records may be examined. The reviewers will protect your privacy. The study records will not be used to put you at legal risk.

Your participation in this study is voluntary. You do not have to provide blood and a nose or throat swab for this study and if you do provide samples and then later change your mind about your samples being stored and used, you can ask for any remaining samples to be destroyed. If you do change your mind, please notify your study staff in writing. If you withdraw your permission to use your samples, no new testing will be done; however, the results of any tests already performed will remain in the study data.

Your participation in this study may be stopped at any time by the study doctor or the sponsor without your consent for any of the following reasons:

  • if it is in your best interest;
  • you do not consent to continue in the study after being told of changes in the research that may affect you;
  • or for any other reason.
You will be told about any new information that might change your decision to be in this study. You may be asked to sign a new consent form if this occurs.

Please email the study staff at:
COVID19ImmuneResponse@adaptivebiotech.com

Or call ImmuneRACE Toll Free Study Line at:
(855)-419-3387 (M-F 9AM – 8PM EST)

You can contact the study research coordinator:

Emily Svejnoha
Phone: 206-693-2032
Email: esvejnoha@adaptivebiotech.com

And/or the study doctor:

Jennifer Dines
Phone: 206-279-2486
Email: jdines@adaptivebiotech.com

For any of the following reasons:

  • if you have any questions about the ImmuneRACE study or your part in it,
  • if you feel you have had a research-related injury, or
  • if you have questions, concerns or complaints about the research.

If you have questions about your rights as a research subject or if you have questions, concerns or complaints about the research, you may contact:

Western Institutional Review Board® (WIRB®)
1019 39th Avenue SE Suite 120
Puyallup, Washington 98374-2115

Telephone: 1-800-562-4789 or 360-252-2500

E-mail: Help@wirb.com

WIRB is a group of people who independently review research.
You may contact WIRB if the research staff cannot be reached or if you wish to talk to someone other than the research staff.

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