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Emory University School of Medicine
Consent to be a Research Subject

Title: Feasability and Reliability of Internet Crowdsourcing Data Collection for Dermatologic Quality of Life Assessment Tools

Principal Investigator: Suephy Chen, MD

Other Investigators: Robert Swerlick, MD, Adam Sperduto

Study No.: 11426
Emory University IRB
Exempt — Acknowledged on: 7/1/2010

Introduction/Purpose

You are being asked to be in a research study because you are a user of the CureTogether.com website who reports having eczema/atopic dermatitis, seborrheic dermatitis, psoriasis, rosacea, or acne. This form is designed to tell you everything you need to think about before you decide to consent (agree) to be in the study or not to be in the study. The purpose of this study is to determine the feasibility and reliability of internet-based data collection techniques compared to clinic-based (face-to-face) data collection using surveys that assess quality of life for people with skin conditions. Several hundred people are expected to participate in this study. This research study is being done by Adam Sperduto, Robert Swerlick, M.D., and Suephy Chen, M.D. at the Emory University School of Medicine.

Procedures

Your participation is completely voluntary and you have the right to refuse to be in this study. If you agree to participate, you will be asked to check a box indicating you have read and understand this consent form. You will be directed to a link to the Skindex survey and asked to complete it now. You will also be sent a link to the Skindex survey in seven days and asked to complete it again at that time. If you indicate today that you experience itch as a component of you skin condition you will also be directed to a link for the ItchyQoL survey and asked to complete it now. You will also be sent a link to the ItchyQoL survey in seven days and asked to complete it again at that time. Each survey will take approximately 5 minutes to complete. After you complete the survey(s) today we will ask for your email address. Researchers will not be able to link your responses to your email address in any way. Your email address will be used only to solicit completion of the second survey(s) in seven days.

Risks and Discomforts

There are no foreseeable risk or discomforts associated with this study.

Benefits

This study is not designed to benefit you directly. This study is designed to learn more about internet-based data collection compared to clinic-based data collection using surveys that assess quality of life for people with skin conditions. We also hope to learn about the relative importance of the emotional impact compared to the symptoms and/or functional impairment of dermatologic disease.

Compensation

You will not be offered payment for being in this study.

Confidentiality

Certain offices and people other than the researchers may look at study records. Government agencies and Emory employees overseeing proper study conduct may look at your study records. These offices include the Emory Institutional Review Board, the Emory Office of Research Compliance, and the Emory Office for Clinical Research. Records may also be opened by court order. We will keep you records private to the extent allowed by law.

A study identification number rather than your name will be used on study records wherever possible. Your email address will be used only to solicit completion of the second survey and will not be linked to the responses you provide in any way. Your name, email address, and other facts that might point to you will not appear when we present this study or publish its results.

Withdrawal from the Study

Your participation is completely voluntary and you have the right to refuse to be in this study at any time. You do not have to answer any questions that you do not want to answer. This decision will not affect in any way your current or future relationship with CureTogether.com or the Emory University School of Medicine in any way.

Questions

If you have any questions about this study call Dr. Suephy Chen, the investigator in charge at 404-778-3084. 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 the Emory Institutional Review Board at 404-712-0720 or 877-503-9797 or irb@emory.edu.

Consent

Nothing in this form can make you give up any legal rights. By checking the box and clicking "Submit" you will not give up any legal rights.

You may download or print a copy of this consent form to keep for your records.

If you are willing to volunteer for this research, please check the box below. Checking the box and clicking "Submit" is considered your consent to participate.

Yes, I am willing to be a volunteer in this study.

Submit or I do not wish to participate