Do you want to help researchers find better treatments and cures for liver diseases?
The American Liver Foundation Patient Registry will help provide researchers with a better understanding of liver diseases, the impact of current treatments, and how your liver disease affects YOU! It was created to collect important data about liver diseases from the patient’s perspective.
Who Can Participate?
American Liver Foundation Patient Registry is open to adults 18 year and older in the United States with any type of liver disease and your participation is voluntary. If you decide to join the registry, we will gather data about your liver disease by asking you to answer questions in a survey. We will combine your answers with answers from other people who join, and researchers will use this data for different research studies.
How Does it Work?
The American Liver Foundation Patient Registry is powered by the Empiramed PRO Portal platform. The PRO Portal is designed to be easy to use. You will know what you are working on, how long it will take to complete, and where you are in the survey process. The PRO Portal saves your work automatically, so you do not have to worry about losing your entries if you stop in the middle of the survey.
What Will I Do?
Share your experience with liver disease! If you decide to participate in the American Liver Foundation Patient Registry, you will be asked to complete a survey online. It should take about 30 minutes to complete, and you can pause at any time and return to the survey at a later time. The survey will ask about:
- Your history of liver disease(s)
- How you manage/treat your disease and its symptoms
- Other medical conditions that may be relevant to your liver disease
- Lifestyle choices that may influence your liver
- Some information about you
After you complete the initial survey, you can then use the PRO Portal to report any changes in your condition by using “Diary Buttons.” You will receive notifications from the PRO Portal when new surveys become available. If you decide to participate in new surveys, you will complete the new survey and report your experience as accurately as possible.
You may also be eligible to participate in additional research activities once you have completed the initial survey. If you are eligible, you will receive email notifications to invite you to participate, which will include additional instructions. You will also see a notification in the “Notifications” section of your personal study “Overview” page that you have a “pending information request.”
As a reminder, you can say yes or no to taking part in additional activities. You can agree to participate in the American Liver Foundation Patient Registry and take the initial survey but still say no to future studies.
Get Involved
How Do I Sign-Up?
Ready to make a difference in liver disease research? Head to the American Liver Foundation Patient Registry on the PRO Portal platform and register to get started today!
Testimonials
Would you like to hear what others have to say? Step into the stories of those who have decided to participate in the American Liver Foundation Patient Registry.
FAQs
Dive into our FAQ section for clear, concise answers to common queries, helping you navigate your way to a smoother, more informed experience with us.