SURVEY PRIVACY POLICY

Welcome!

 

• We need your permission before we can ask you any questions, so please read the following Informed consent document.

• For questions about the study, contact Luminaries 

•  Survey Partner: Momentive Privacy Notice

 

Purpose of Research

The Luminaries Initiative aims to identify factors that contribute to cancer Survivorship wellbeing and health. The Luminaries Initiative has been created by Luminaries Inc.

You are being invited to enter the Luminaries Initiative, which is gathering information on people’s health and wellbeing. As a Luminaries participant you will be invited to take part in future programs.

 

Your participation in this study is voluntary. If you decide to end your participation in this program you should notify Luminaries

 

Program Activities

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• The Luminaries Initiative consists of a number of online surveys. The first survey takes 20-30 minutes and asks for your contact details and about your basic demographics (i.e. age, gender, language), lifestyle habits and behaviors (i.e. sleep, diet, physical activity, use of alcohol, exercise, gratitude, focus). Later surveys will ask similar questions about your lifestyle habits, health, and wellness.

• You may be asked if you would like to be interested in being interviewed about your experience as a Luminaries participant. If you do NOT wish to be contacted about being interviewed, please indicate that on the first survey.

• You may also be asked if you would be interested in being contacted about participating in other non-Luminaries related studies in the future. If you do NOT wish to be contacted, please indicate that on the first survey.

• You may be asked for your permission to include your name, contact details, and responses from the first survey you complete in the Luminaries Initiative. This is a registry of individuals who agree to be contacted in the future to learn more about research studies conducted with Luminaries. It does not obligate you to participate in these studies. If you do NOT wish to be contacted, please indicate that on the first survey.

 

  

Duration of Study Involvement

• We anticipate the study will continue to 2099, and we welcome your involvement for as long as you can take part. The more surveys you complete, the most we will learn about wellbeing and health overtime.

 

Voluntary Participation

• Your participation is entirely voluntary. Your decision not to participate will not have any negative effect on you or your medical care. You can decide to participate now, but withdraw your consent later and stop being in the study without any loss of benefits or medical care to which you are entitled.

 

Potential Benefits

• The goal of Luminaries Inc. is to learn how to promote living well and selfcare. We cannot and do not guarantee or promise you will receive any benefits from this study. By participating, you also will contribute to the health and wellbeing of your community.

 

Possible Risks

• The risks associated with this study are minimal and we do not expect any negative effects from participating. We follow federal (HIPPA) and state regulations to protect your information. While loss of confidentiality is a risk, we take care to protect your information. We may communicate with you via email or text that is not encrypted, but that we will use every reasonable effort to ensure no sensitive information is in these communications.

 

Financial Considerations

• In general, you will not be paid to be part of the Luminaries Initiative. Program-branded items my be provided during your time in the study such as pens, stickers, buttons, journals, clothing items, etc.

 

Participants’ 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. The alternative is not to participate. The results of this research study maybe presented at scientific or professional meetings or published in scientific journals. However, your identity will not be disclosed.

  

For Questions about the Study

• Questions, Concerns or Complaints: If you have any questions, concerns or complaints about this research study, its procedures, risks and benefits, you should contact Luminaries.

 

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. Clicking the button that says “I agree” will provide that authorization. The information provided here 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 and the informed consent form and as required or allowed by law. Please read 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?

• The Luminaries Initiative is an international registry created by Luminaries Inc. The Luminaries Registry will provide an ongoing source of valuable information on factors related to cancer survivorship. Thousands people from all over the world are anticipated to take part in the Luminaries Initiative.

 

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 Luminaries. Your authorization is not a condition for receiving any medial 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 program) 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 (i.e., 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 contact Luminaries.

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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 following protected health information:

1. Contact Information (name, address, phone number, e-mail address, contact details of friend/family members, Web Uniform Resource Locators (URLs), Internet Protocol (IP) address numbers

2. Socio-demographic data (age, gender, place of birth, ethnicity, race, language, marital status, number of children, number of people in household, education, income, employment status)

3. Health information (ie. Self-reported health, number of prescribed medications, brief health history)

4. Health behavior information (relating to physical activity, sleep, alcohol use, diet)

5. Perceptual information (your well-being, mood, social environment)

 

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:

• Luminaries Founders

• Luminaries Staff

 

Please print a copy of this page for your records.

If you wish to be in the program, please click the button that says “I agree”. You will then be directed to complete the first Luminaries survey.