Registry aims to reach diverse audiences to ensure future treatments and cures meet their needs
FAIRFIELD, New Jersey, April 10, 2025 /PRNewswire-HISPANIC PR WIRE/– American Liver Foundation (ALF) announces the first-ever Spanish-language patient registry for all types of liver diseases. The American Liver Foundation Patient Registry, which launched in July, helps provide researchers with a better understanding of liver diseases, the impact of current treatments, and how liver disease affects patients. The registry is now available in Spanish to help ensure that the needs and experiences of the Hispanic/Latino community will be incorporated into the data that may help lead to future treatments and cures for liver disease. The new Spanish-language patient registry, available at liverpatientregistry.org, has a user-friendly platform powered by EmpiraMed, a digital health technology company that focuses on Longitudinal Registries and Virtual Clinical Trials data collection through its PRO Portal™ application.
“Too often, non-native English speakers are excluded from vast research studies simply because of language barriers,” said Lorraine Stiehl, CEO, American Liver Foundation. “It is so important for researchers working on new treatments and cures for liver disease to have participation from diverse communities and we hope having the registry in Spanish will be an important step towards reaching Hispanic/Latino audiences.”
The new ALF Spanish-language registry for liver disease does not use a simple translation plug-in, instead, it was translated using a professional translation and language services that provides high-quality, certified translations in healthcare and other fields, to ensure that it’s easy for patients to understand complex medical and research terminology using a culturally appropriate language.
“Although we have much more to do in order to reach everyone living with liver disease, we don’t want language barriers to stop us from helping Hispanic/Latino communities as they grapple with these diseases. We’re excited to invite diverse communities to join ALF’s Spanish Language Patient Registry and share critical information that can help many at all stages of liver disease,” said Helene Jordan, National Senior Director of Research Program Management.
The 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 recipients. 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. Patients’ privacy is very important to us, and ALF will not share any participant’s name, email address, or any other data that could identify them.
To access the American Liver Foundation Patient Registry in Spanish visit liverpatientregistry.org and select Spanish by clicking on the flag at the top right of the screen. For the best user experience, please do not select any translation pop-ups, which may appear on different browsers.
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).
About EmpiraMed, Inc.
EmpiraMed, a StoryCatch Partners company, uses real-world evidence to discover patterns that inform better healthcare globally. EmpiraMed is a digital research company that performs post-market, prospective, virtual clinical studies to generate real-world data (RWD). The technology platform attracts, engages, and supports consumers and collects consented participants’ RWD for clinical trials and observational studies. The company also offers platform hosting services to foundations and organizations to better serve their community goals. Please visit EmpiraMed.com for more information.
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SOURCE American Liver Foundation
