<span class="study_label">Evaluating the Experience and Discrimination in<br>People with Alcohol-related (or Alcohol Associated) Liver Disease:<br>An International Study - Patient Survey</span><br> <u>Eligibility Questions:</u><br> This part of the survey will include a few simple questions to help us understand if you're eligible to take part. It's an important step to make sure the survey is right for you.
You are eligible for our study, please hit the "Continue" button to move to the consent page and the survey. Thank you for your time.
We appreciate your time, but based on your responses, you do not meet the eligibility requirements for this survey.
<span class="study_label">Evaluating the Experience and Discrimination in People with<br>Alcohol-related (or Alcohol Associated) Liver Disease:<br>An International Study - Patient Survey</span> <span class="study_label">Informed Consent for a Research Study</span> <u>INTRODUCTION AND PURPOSE OF THE STUDY</u><br> You are invited to participate in a research study which involves answering questions to help better understand the experience of individuals living with Alcohol-related (or Alcohol Associated) Liver Disease and to help us explore stigma (stereotypes, prejudices and discrimination) as it relates to living with a liver disease. The results of this survey will be used to provide us a better understanding of your thoughts and feelings about living with Alcohol-related (or Alcohol Associated) Liver Disease. In addition, you will be asked whether you would like to complete an optional quality of life questionnaire (Chronic Liver Disease Questionnaire, CLDQ or CLDQ-ALD survey) which explores how having Alcohol-related (or Alcohol Associated) Liver Disease is affecting your quality of life. Your answers will help us understand how your liver disease impacts the quality of your life. This is a one-time survey and you will not be re-contacted for this study. Completion of the survey should take approximately 15 minutes. <br><br> Your participation in this survey will provide valuable insight into understanding your perspectives about living with Alcohol-related (or Alcohol Associated) Liver Disease. This valuable information can potentially assist in the development of more individualized care. <br><br> <u>What will happen if I take part in this research study?</u><br> If you agree to participate, you will be asked to complete a survey via an online Oracle Apex platform. The survey includes 75 questions and an optional CLDQ-ALD questionnaire that includes 57 questions. It should take approximately 15 minutes to complete. You are not required to answer every question and can skip questions at any time if you do not feel comfortable answering. This is a one-time questionnaire, and you will not be re-contacted. <br><br> <u>What risks or benefits can I expect from being in the study?</u><br> We do not foresee any possible risks. Your responses will be held completely confidential and no personal identifying information will be asked for or gathered from you. There is no immediate benefit to you but you will be assisting us gain an understanding of your experience as a person living with Alcohol-related (or Alcohol Associated) Liver Disease. <br><br> <u>Will my information be kept private?</u><br> Efforts have been made to protect your identity; we have not placed an identifying code on the survey form and no one outside of the research team will have access to the individual completed surveys. Only group data will be reported, and responses will not be person-identifiable. This information will be kept in a password protected file and saved to a research drive that is only accessible to research study staff. Once data analysis is complete and the research results are reported, the individual surveys will be kept in a password protected database only accessible to the research team. You may request a copy of the research results by contacting Fatema Nader at Fatema.Nader@cldq.org.
<u>What other choices do I have if I do not take part in this study?</u><br> Taking part in this research study is voluntary. If you choose not to participate, there will be no penalty or loss of benefits to which you are otherwise entitled. <br><br> <u>Who can answer my questions about the study?</u><br> If you have any questions regarding this research study, please contact Fatema Nader at Fatema.Nader@cldq.org. If you would like more information about your rights as a participant in a research study, contact: WCG IRB at (855) 818-2289 or researchquestions@wcgirb.com. WCG IRB is a group of people who perform independent review of research. <br><br> <u>Agreement to Participate</u><br> Your participation is completely voluntary, and you can withdraw and exit the survey at any time.