Study Title: Evaluating the effect of COVID 19 pandemic on caregivers
Principal Investigators: Khushboo Sheth, Kate Lorig
Version Date: 4/12/2020

DESCRIPTION: You are invited to participate in a research study. Stanford University School of Medicine is developing some questionnaires for caregivers of adults during the COVID pandemic. These are unprecedented times and as caregivers, you might be facing additional problems. We have developed a questionnaire to study how the COVID 19 (disease caused by coronavirus (current strain SARS-CoV2) pandemic might be affecting you and your ability to be a caregiver. If you are a caregiver, please consider filling out our questionnaire which will help us understand the effect COVID 19 on you (caregiver) and your care partner (the person you are caring for). The results from this study can help us focus on interventions that might help caregivers during these stressful times.

Identifiers might be removed from identifiable private information and, after such removal, the information could be used for future research studies or distributed to another investigator for future research studies without additional informed consent from you.

TIME INVOLVEMENT: Your participation will take approximately 5-10 minutes.

RISKS AND BENEFITS: There are no risks associated with this study. The benefits which may reasonably be expected to result from this study are looking at aspects that affect caregivers and their well-being. We cannot and do not guarantee or promise that you will receive any benefits from this study.

PAYMENTS: You will not receve any payment for your participation.

PARTICIPANT'S RIGHTS: If you have read this form and have decided to participate in this project, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. The alternative is not to participate. You have the right to refuse to answer particular questions. The results of this research study may be presented at scientific or professional meetings or published in scientific journals. Your individual privacy will be maintained in all published and written data resulting from the study.

Authorization To Use Your Health Information For Research Purposes

Because information about you and your health is personal and private, it generally cannot be used in this research study without your authorization. If you agree to participate, it will provide that authorization. The form is intended to inform you about how your health information will be used or disclosed in the study. Your information will only be used in accordance with this authorization form and the informed consent form and as required or allowed by law. Please review it carefully before agreeing to participate.

What is the purpose of this research study and how will my health information be utilized in the study?

We have developed a questionnaire to study how the COVID 19 (disease caused by coronavirus (current strain SARS-CoV2) pandemic might be affecting you and your ability to be a caregiver. If you are a caregiver and decide to fill out our questionnaire, it will help us understand the effect COVID 19 on you (caregiver) and your care partner (the person you are caring for). The results from this study can help us focus on interventions that might help caregivers during these stressful times.

Do I have to provide my authorization?

You do not have to provide your authorization. But if you do not, you will not be able to participate in this research study. Agreeing to participate is not a condition for receiving any medical care outside the study.

If I provide my authorization, can I revoke it or withdraw from the research later?

If you decide to participate, you are free to withdraw your authorization regarding the use and disclosure of your health information (and to discontinue any other participation in the study) at any time. After any revocation, your health information will no longer be used or disclosed in the study, except to the extent that the law allows us to continue using your information (e.g., necessary to maintain integrity of research). If you wish to revoke your authorization for the research use or disclosure of your health information in this study, you must write to: Kate Lorig (lorig@stanford.edu)

What Personal Information Will Be Obtained, Used or Disclosed?

Your health information related to this study, may be used or disclosed in connection with this research study, including, but not limited to, your current symptoms, diagnosis of COVID-19, testing for COVID-19, your past medical history, your caregiving history (such as relationship to the care partner, caregiving hours), and your email address (voluntary). Your health information related to this study may be used or disclosed in connection with this research study although any data from this study will only be shared in aggregate with no identifying information attached.

Who May Use or Disclose the Information?

The following parties are authorized to use and/or disclose your health information in connection with this research study:

  • The Protocol Director : Kate Lorig
  • The Stanford University Administrative Panel on Human Subjects in Medical Research and any other unit of Stanford University as necessary
  • Research Staff

Who May Receive or Use the Information?

The parties listed in the preceding paragraph may disclose your health information to the following persons and organizations for their use in connection with this research study:

  • The Office for Human Research Protections in the U.S. Department of Health and Human Services

Your information may be re-disclosed by the recipients described above, if they are not required by law to protect the privacy of the information.

When will my authorization expire?

Your authorization for the use and/or disclosure of your health information will end on 31st December 2050 or when the research project ends, whichever is earlier.

CONTACT INFORMATION:

Questions: If you have any questions, concerns or complaints about this research, its procedures, risks and benefits, contact the Protocol Director, Kate Lorig, lorig@stanford.edu

Independent Contact: If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a

participant, please contact the Stanford Institutional Review Board (IRB) to speak to someone independent of the research team at (650) 723-5244 or toll free at 1-866-680-2906. You can also write to the Stanford IRB, Stanford University, 1705 El Camino Real, Palo Alto, CA 94306.

Please print or save a copy of this page for your records.

If you agree to participate in this research, please complete the attached questionnaire.

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