American Liver Foundation Announces First-Ever Patient Registry for All Types of Liver Disease

July 8, 2024

New registry will help researchers find better treatments and cures

American Liver Foundation (ALF) announced the first-ever patient registry for all types of liver disease. The American Liver Foundation Patient Registry will help provide researchers with a better understanding of liver diseases, the impact of current treatments, and how liver disease affects patients. The new patient registry has a user-friendly platform powered by EmpiraMed™, an observational data research company that focuses on registry data through the PRO Portal™ and is available at liverpatientregistry.org.

“There are more than 100 different types of liver disease, and it is imperative that researchers have access to information from the patient’s perspective to help discover better treatments and cures,” said Lorraine Stiehl, CEO, American Liver Foundation. “Until now, there has not been one central place where researchers interested in liver disease can access information on a patient’s disease history and more importantly, how patients are managing their disease and its often-debilitating symptoms and comorbidities such as diabetes, heart disease and obesity.”

“As someone who has devoted my career to research and helping patients live better lives, it is my hope that the new American Liver Foundation Patient Registry will spur a renewed interest in liver disease research, especially in areas that have been without any new advances or treatments for years, such as autoimmune and rare liver diseases,” said Emmanuel Thomas, MD, PhD, FAASLD, ALF Board Chair and Associate Professor at University of Miami School of Medicine and member of the Sylvester Comprehensive Cancer Center and the Schiff Center for Liver Diseases at University of Miami.

The new American Liver Foundation Patient Registry is open to adults 18 years and older in the United States with any type of liver disease and at any stage, including transplant. Participation is easy and includes an online survey with questions about a patient’s history of liver disease(s), how a patient has managed or treated their disease and its symptoms, other medical conditions or lifestyle issues that may be relevant to their liver disease journey, and some basic patient information. Patients may also be eligible to participate in additional research activities once they have completed the initial survey.

“Throughout the development of the American Liver Foundation Patient Registry, we have strived to make the process as simple and user-friendly as possible for patients,” said Helene Jordan, PhD, National Senior Director, Research Program Management, who led the creation of the registry along with a group of researchers and medical experts. “Our goal is to make a difference in liver disease research and help researchers carve out new and exciting pathways to discover better treatments and cures. We are thrilled to give patients the opportunity to help change the face of liver disease for future generations by sharing how their liver disease affects them. We also anticipate that the American Liver Foundation Patient Registry will be a useful tool for patients to learn more about their disease. We hope all adults at any stage of liver disease, including transplant recipients, will consider participating.”

To learn more about the American Liver Foundation Patient Registry visit patientregistry.liverfoundation.org or sign-up directly at liverpatientregistry.org

About the American Liver Foundation

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 (800-465-4837).

Last updated on July 12th, 2024 at 09:18 am

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