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Iranian Genome Project Survey for Eligibility

 

DESCRIPTION:  You are invited to participate in a survey to determine your eligibility for the Iranian Genome project.  The Iranian Genome Project will develop an anonymous research resource that researchers around the world will use. This resource will be a catalog of human genetic variation, and will include both: (1) blood samples and material taken from the blood samples; and (2) data from the study of the samples, which will be kept on scientific databases available over the Internet. The resource will be used in future studies related to health and disease.  This study is funded by the PARSA foundation and is being conducted by Russ Altman, MD/Ph.D. of Stanford University and Dr. Altman's student, Roxana Daneshjou, a Stanford Medical Student and Howard Hughes Medical Institute Medical Fellow.

 

The purpose of this survey is to determine if you are eligible for the Iranian Genome Project.  Other than general questions about your weight, age, and general health (asking if you are generally healthy), no health information will be asked in this survey.  Filling out this survey does not mean you consent to participating in the Iranian Genome Project -- if you are contacted to participate, you will have the choice to sign the consent form linked below to fully participate in this study. Participation is completely voluntary. Not everyone who fills out this survey will be contacted to participate. If you are not chosen to participate, your contact information and survey results will be destroyed immediately. If you choose to participate, your survey results and contact information will be destroyed after you have signed the Iranian Genome Consent form, given a completely anonymous sample, and all samples have been collected.  You may also contact us at any time and ask that your survey results be destroyed.   

 

No health information will be utilized in this survey (other than asking for age, weight, and if you are generally healthy).  These questions are to determine if you are eligible for this study.  We will not have access to your health files or ask you any questions about health issues you may have.

 

 

PROCEDURES:  With your permission, we would like to collect the following information to determine whether you are eligible to participate in the Iranian Genome Project:

 

Your basic health - weight and age in order to determine whether you are eligible for this study 

 

Your ethnic background - your identified ethnic background, birth place, religion, and spoken languages/dialects as well as the identified ethnic background, birth place, and religion of your parents and grandparents. You may want to consult with your parents and/or grandparents about their answers prior to filling this survey out. Please try to answer as completely and accurately possible. If you are unsure of an answer, please indicate it on the form.

 

Your contact info - email and phone number so that you may be contacted if you are eligible for this study, at which point you can choose to participate or have all of your information destroyed.  You may ask to have your survey information destroyed at any point by contacting Russ Altman, MD/Ph.D (contact info below).  

 

For questions about the study, contact: Russ Altman, 318 Campus Drive S172, MC: 5444, Stanford, CA 94305-5444. Tel: (650) 725-3394 Fax: (650) 723-8544 Email: russ.altman@stanford.edu

 

RISKS AND BENEFITS:  There are no anticipated risks with filling out this survey.  We cannot and do not guarantee or promise that you will receive any benefits from this study or that you will be eligible to participate in the Iranian Genome Project.

 

TIME INVOLVEMENT:  This survey takes about 15-20 minutes to complete.

 

PAYMENTS: You will not be paid for taking this eligibility survey.

 

PARTICIPANT’S RIGHTS:  Your decision whether or not to participate in this study will not affect your medical care.  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.  Your identity will not be disclosed in any published and written material resulting from the study.  

 

This survey is part of the Iranian Genome Project. By clicking "I accept" below, you consent to being contacted and given the choice to participate or not to participate in the Iranian Genome Project. Filling out this survey does not mean you consent to participating in the Iranian Genome Project -- if you are contacted to participate, you will have the choice to sign the consent form linked below to fully participate in this study. Participation is completely voluntary. Not everyone who fills out this survey will be contacted to participate. If you are not chosen to participate, your contact information and survey results will be destroyed immediately. If you choose to participate, your survey results and contact information will be destroyed after you have signed the Iranian Genome Consent form, given a completely anonymous sample, and all samples have been collected and analyzed. For full details of this study, please read the complete consent form: http://tinyurl.com/9bcwswt

 

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 Dr. Russ Altman MD/Ph.D., (650) 725-3394.  You should also contact her at any time if you feel you have been hurt by being a part of this study. 

 

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, MC 5579, Palo Alto, CA 94304.

 

I consent to participate to determine eligibility.

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