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IC Vision & Eyesight Survey Launched Today

Emory Eye Center Seeks Your Help with IC Vision Study

As some of you may know, we have recently learned of work done at Emory University regarding vision loss in some patients with interstitial cystitis. We have been in touch with these researchers to help facilitate their ongoing work, and they are interested in hearing from you.  Please click the survey link at the end of this email if you wish to participate in this anonymous survey. The deadline for participation is: November 30, 2018.

Emory University
Online Consent/Information Sheet
For a Research Study 

Study Title: Survey to explore the prevalence and risk factors for macular disease in patients with interstitial cystitis (IC)

Principal InvestigatorNieraj Jain, MD, Emory Eye Center

Introduction and Study Overview

Thank you for your interest in our study. We would like to tell you everything you need to think about before you decide whether or not to join the study.  It is entirely your choice.  If you decide to take part, you can change your mind later on and withdraw from the research study.

The purpose of this study is determine how commonly patients with IC have retina problems, and to identify risk factors for these retina problems. This study will take about 10-15 minutes to complete. If you join, you will be asked to answer questions about your personal characteristics, visual symptoms and eye health history, and past medical and medication history.

The primary risk of this study is a breach of confidentiality. This study is not intended to benefit you directly, but we hope this research will benefit people in the future. Your privacy is very important to us. Your health information that identifies you is your “protected health information” (PHI). No PHI will be collected through the course of this study. To protect your PHI, we will follow federal and state privacy laws, including the Health Insurance Portability and Accountability Act (HIPAA). You may revoke your authorization at any time by calling the Principal Investigator, Nieraj Jain.

Contact Information

If you have questions about this study, your part in it, your rights as a research participant, or if you have questions, concerns or complaints about the research you may contact the following:

Nieraj Jain, Principal Investigator:  404-778-5816

Emory Institutional Review Board: 404-712-0720 or toll-free at 877-503-9797 or by email at irb@emory.edu

Consent

Do you have any questions about anything stated above? Were there any parts that seemed unclear?

Do you agree to take part in the study? If Yes, click here:

By |2018-11-23T16:35:32+00:00November 23rd, 2018|Interstitial Cystitis Network Blog, Research|Comments Off on IC Vision & Eyesight Survey Launched Today

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.