ROS1+ Research Survey

At the bottom of this page is a link to an online survey that will help researchers and doctors to better understand ROS1-positive cancer patients’ diagnosis and treatment journey as well as any family and/or exposure history among other factors that might have contributed to the development and progression of their cancer. Cancer patients whose tumor tested positive for the ROS1 gene fusions (using any type of genomic testing) are eligible to participate in this survey, which will be available on this page starting May 18, 2016. The survey will be available on our website on an ongoing basis, however, the first round of data analysis will commence on July 15, 2016. ALCF is working with ROS1 patient communities to study this rare cancer for the benefit of ROS1-positive patients across ALL cancer types. We invite you to spread the word on this global effort and join hands with us to make it a success!

Description

You are invited to participate in a research study involving a survey to better understand ROS1 cancers. You will be asked to fill out an online survey which is optional.

Risks and Benefits

The risks associated with this study are none as the survey is optional. The benefits which may reasonably be expected to result from this study are a better understanding on a population-level regarding the demographics and factors that may contribute to ROS 1 cancers. We cannot and do not guarantee or promise that you will receive any benefits from this study.

Time Involvement

Your participation in this experiment will take approximately 30-45 minutes.

Payments

You will not receive any payments for participation in this study.

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. 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 from the study. You have the right to refuse to answer particular questions.

Contact Information

Questions, Concerns, or Complaints: If you have any questions, concerns or complaints about this research study, its procedures, risks and benefits, or alternative courses of treatment, you should ask the Protocol Director, Dr. Manali I. Patel. You may contact him/her now or later at 650-723-4000.

Injury Notification: If you feel you have been hurt by being a part of this study, please contact the Protocol Director, Dr. Manali Patel at 650-723-4000.

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, 3000 El Camino Real, Five Palo Alto Square, 4th Floor, Palo Alto, CA 94306.

Because information about you and your health is personal and private, it generally cannot be used in this research study without your written authorization. If you sign this form, 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 read it carefully before signing it.

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

The purpose of this study is to better understand factors that may influence development of ROS1 tumors. The health information we will use in this study will contribute to understanding the demographic and clinical factors that may contribute to ROS1 cancers. In aggregate, results from this study will be disseminated publicly through presentations and publications to help to contribute to the scant literature and evidence on these cancers.

Do I have to agree this authorization form?

You do not have to agree to this authorization form. But if you do not, you will not be able to participate in this research study.

Signing the form is not a condition for receiving any medical care outside the study

If I agree, 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: Patel, Manali I. at 875 Blake Wilbur Drive, Stanford CA 94305.

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 the treatments you received, history regarding your diagnosis and treatment, your current medical treatments, locations where you lived, worked, and received medical care, and potential environmental toxins that you may have been exposed to either in your work or home environments.

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 Patel, Manali I.
• 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
• Bonnie J. Addario Lung Cancer Foundation

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 December 31, 2190 or when the research project ends, whichever is earlier.

Please print a copy of this page for your records.

If you agree to participate in this research, please follow the link to the online survey.