FAQs – Patient Registry

What is the purpose of the ALF Patient Registry?

American Liver Foundation (“ALF”) is interested in understanding more about liver diseases. ALF created the American Liver Foundation Patient Registry to collect data about liver diseases from the patient’s perspective. The purpose of this registry is to provide researchers with a better understanding of liver diseases, the impact of treatments and resources for your liver disease, and how your liver disease affects you.

If you join the study, 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. For example, by looking for patterns, researchers may learn more about what affects people with different liver diseases and about how different liver diseases work. This may help researchers propose new treatments and other ways to manage liver diseases.

Why have I been invited to take part?

You have been invited because you are at least 18 years old and have or have had one or more liver diseases.

This study is open to adults in the United States with any type of liver disease, and it consists in a survey where you will be asked questions about you and your liver disease. It is expected that up to 10,000 people will complete the survey and the time the survey will be available is open-ended.

You are eligible to participate in this registry if:

You have or have had one or more liver diseases
You are at least 18 years old and considered a legal adult
You are able to read and answer questions in English
You have regular access to an internet connected device

What do I have to do as a participant?

If you decide to participate in the American Liver Foundation Patient Registry, you will be asked to complete a one-time survey online, which should take about 30 minutes to complete. You will not have to complete the whole questionnaire in one sitting and can chose not to provide a response to most questions.

The survey will ask you 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

Because there are many different types of liver diseases, the initial survey will ask you general questions about your liver disease. You do not need to see any healthcare providers or take any medications as part of this study.

Based on your responses to the initial survey, you may be eligible to participate in additional research activities. In that case, ALF may send you emails to invite you to participate in future research activities that are relevant to you if they become available. For example, it could be an additional survey where we ask you to provide more details about your particular liver disease, or a survey about how your liver disease affects your quality-of-life. You may also be able to continue reporting some data over time using “Diary Buttons” that you will find in your personal profile page if they apply to your specific situation (for example, to update medications that you are taking for your liver disease if there are any changes, or to report that you are experiencing new symptoms).

You will have the opportunity to review these new activities and choose if you would like to participate. You can agree to participate in the American Liver Foundation Patient Registry and take the initial survey and still say no to future studies. You will be able to opt out of future study invitations through the study-invite emails themselves or by contacting ALF or EmpiraMed Support at any time.

Do I have to take part?

Your participation in the American Liver Foundation Patient Registry is voluntary. You can choose to join or not. You may stop your participation at any time if you decide to join. No matter what you decide, now or in the future, it will not affect your medical care, change your relationship with ALF or result in any penalty or loss of benefits to which you are otherwise entitled.

How do I access the website?

Log-in to the PRO Portal by pointing your browser to www.liverpatientregistry.org and entering the user ID and password you created for your account when you registered.

What if I have to leave the website while I am entering information?

If you need to stop while filling out your survey or using the EmpiraMed PRO Portal, simply exit your web browser. The system will automatically save your current work. When you log-in to the PRO Portal and enter your user ID and password, the system will place you into the site wherever you were last.

Who is involved in this study?

American Liver Foundation (ALF) is a national community of patients, caregivers and medical professionals dedicated to helping people improve their liver health. Providing guidance and life-saving resources, we are a beacon for the 100 million Americans affected by liver disease. We advocate for patients and families, fund medical research and educate the public about liver wellness and disease prevention. We bring people together through our educational programs and events and create a network of support that lasts a lifetime. ALF is the largest organization focused on all liver diseases and the trusted voice for patients and families living with liver disease. For more information visit www.liverfoundation.org or call 1-800-GO-LIVER.

ALF is working with a company called EmpiraMed to help administer the online survey. If you decide to participate in the study, some of the emails you will receive will come from EmpiraMed. EmpiraMed’s online platform is called the EmpiraMed™ PRO Portal™ Software Platform.

Are there any benefits?

The American Liver Foundation Patient Registry is a research study that is part of an effort to collect more information about liver diseases that may benefit patients with liver disease in the future. It is not expected that you will get direct personal or medical benefit from this research. This research is voluntary and you will not be paid to participate.

However, you may learn more about your liver disease and indirectly benefit from taking part in this study. For example, a summary of the data from all the people who participate in the study (“aggregated data”) will be shared with people who join the registry via a feature on the survey website Portal called “The Feedback Loop”. You can browse to the Feedback Loop tab from your personal profile page and learn how the information you have shared compares to a summary of other study participants with liver diseases. This feature will become available once enough people have completed the survey to make the comparison meaningful. ALF may provide participants with educational resources about their liver disease. You may also be invited to participate in future research opportunities related to your liver disease. Finally, you will be helping researchers make discoveries that may help future generations.

Are there any risks to me by participating in the ALF Patient Registry?

Participating in the study and completing the survey does not cause any risk of physical harm to you. Some of the questions may make you uncomfortable and you will have the ability to decline to answer most questions or exit the survey at any time.

The main risk of participating in the registry is to your privacy in the event of a data breach where someone sees or uses data without permission. EmpiraMed has extensive security measures in place, including encrypting your personal information and keeping your name separate from your survey answers. Thus, we believe that the risk of data breaches and loss of confidentiality is very small, but it cannot be eliminated completely.

How will my personal information be kept confidential?

Your privacy is very important to us. We will take great care to protect it.

Here are a few of the steps we will take to protect your data:

Participation in this American Liver Foundation Patient Registry requires you to register using a name and email address. We will then verify your identity by sending an email to the address you used to sign up for the study. This step helps us ensure that you are the one who has signed up for the American Liver Foundation Patient Registry.
All reasonable efforts will be used to protect the privacy and confidentiality of the information you provide. Your responses to the survey questions will be kept separate from your name and email address, and we will not ask for your date of birth, social security number, address, or other common personally identifiable information. However, there is always a small risk of a breach of confidentiality that cannot be totally eliminated. We will tell you if there is a data breach.
ALF will limit and keep track of who can see your health data and any other survey answers collected in the study. Additionally, ALF will make sure that any data that is shared with those working with ALF will not identify you by name (“de-identified” data). ALF may share this anonymous data with other researchers who also wish to better understand the impact of liver diseases. You will not be identified by name in any published reports about this survey or in any other scientific publication or presentation.

Can I withdraw/”quit” the study?

If you decide to participate in the study, you can change your mind at any time. If you decide to “withdraw” (quit the study), you just need to tell us. You may “withdraw” from the study yourself at any time through the withdrawal button in the Privacy Settings section of the website Portal, by unselecting the Privacy Policy acceptance checkmark in the website Portal, or by contacting the study’s Principal Investigator using the contact information at the end of this form. Withdrawing from the study will remove your personal information from the Portal and you will not receive further communication from EmpiraMed related to this survey. You may continue to receive communication from ALF if you are already a member of their community.

If you stop being part of the study for any reason, ALF may continue to use and distribute any survey responses you have provided prior to your withdrawal, as long as this is for the purpose described in the consent form. In addition, if you withdraw from the study, your personally identifiable information will be redacted to protect your privacy and you will no longer be able to log-in to the website Portal.

Is there any cost for participation?

There is no cost to you for completing the survey and you will not be compensated for completing the survey.

What kind of computer or browser do I need?

You only need a computer or mobile device with a standard web browser. You do not need to download or install any software onto your computer or applications on your mobile device. Your browser is likely up-to-date, but if it is not, you will be notified when you connect to the PRO Portal. The notification will contain links to new browser software. If you need technical assistance with the PRO Portal website or installation of new browser software, please contact EmpiraMed at (413) 233-5850. Note that we currently provide tech support in English only.

Who can answer my questions about the study?

For questions about the registry, email registry@liverfoundation.org or call 1-800-GO-LIVER

For registry technical support, email support@empiramed.com or call 413-233-5850