American Liver Foundation Launches Spanish Patient Registry for Liver Diseases

American Liver Foundation Launches a Spanish Patient Registry for Liver Diseases



On April 10, 2025, the American Liver Foundation (ALF) made a landmark announcement regarding the launch of the first-ever Spanish-language patient registry aimed at individuals suffering from all types of liver diseases. This initiative comes with the aim of providing a more inclusive research platform that addresses the needs and experiences of the Hispanic and Latino communities across the United States.

The Patient Registry, which initially rolled out in July 2024, is designed to enhance researchers' understanding of liver diseases, the efficacy of current treatments, and the overall impact of these conditions on patients' lives. By making this registry available in Spanish, ALF aims to ensure that vital data reflects the voices of those who are often excluded from major research initiatives due to language barriers.

Bridging the Language Gap


Lorraine Stiehl, CEO of the American Liver Foundation, emphasized the importance of inclusivity in medical research. She stated, "Too often, non-native English speakers are left out of significant research studies simply because of language barriers. It is crucial that researchers working on new treatments and cures for liver disease have the input from diverse communities. We hope that having the registry available in Spanish will be an important step in reaching the Hispanic/Latino audience."

The Spanish-language registry at liverpatientregistry.org is powered by EmpiraMed, a health technology company that specializes in collecting longitudinal data and conducting virtual clinical trials through its PRO Portal™ application. This platform is designed to be user-friendly, enabling participants to easily engage with the registry.

EmpiraMed has invested in high-quality professional translation services to ensure that medical and research terminology is accessible and culturally appropriate for Spanish-speaking patients. This careful approach aims to minimize confusion and enhance comprehension, ultimately leading to better participant engagement and more accurate data collection.

Expanding Access to Research


Helene Jordan, Senior National Director of Research Program Management, expressed enthusiasm regarding this new initiative: "While we have a lot more work to do to reach all those living with liver diseases, we don’t want language barriers to hinder our efforts to assist Hispanic/Latino communities in dealing with these diseases. We are excited to invite diverse communities to join the ALF Spanish Patient Registry and share critical information that can benefit many at all stages of liver disease."

The American Liver Foundation’s registry is open to adults over the age of 18 in the U.S. with any form of liver disease, including transplant recipients. The registration process is straightforward and involves completing an online survey that covers the patient's liver disease history, treatment strategies, and symptoms, among other relevant health conditions. There may also be additional research opportunities available after the initial survey.

ALF ensures that participant privacy is a top priority, pledging not to share personal identifiers such as names or email addresses without consent.

To access the Spanish version of the American Liver Foundation Patient Registry, users can visit liverpatientregistry.org and select the Spanish option by clicking the flag icon located at the top right of the page. Participants are advised not to select any translation pop-ups that may appear, as these could interfere with the user experience.

About the American Liver Foundation



The American Liver Foundation (ALF) serves as a national community for patients, caregivers, and medical professionals committed to advancing liver health. By providing essential guidance and resources, ALF aims to empower the 100 million Americans affected by liver diseases. The organization advocates for patients and their families, funds medical research, and educates the public on liver wellness and disease prevention. Through various programs and educational events, ALF fosters a supportive network for individuals affected by liver conditions. For more information, visit www.liverfoundation.org or call 1-800-GO-LIVER (1-800-465-4837).

About EmpiraMed, Inc.



EmpiraMed is a StoryCatch Partners company that utilizes real-world evidence to uncover patterns that improve global healthcare. This digital research company conducts virtual, prospective, and post-marketing studies to gather consented real-world data (RWD). Their tech platform engages participants and captures RWD for clinical trials and observational studies. EmpiraMed also offers platform hosting services to foundations and organizations, enabling them to better serve their community's goals. For more information, visit EmpiraMed.com.

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