#USA #Fairfield #American Liver Foundation #Spanish Registry #Liver Diseases

American Liver Foundation's New Spanish Language Patient Registry

In a significant step towards inclusivity and better healthcare accessibility, the American Liver Foundation (ALF) has launched the first-ever patient registry for all liver diseases, specifically tailored for Spanish-speaking individuals. This groundbreaking initiative aims to deepen the understanding of liver diseases and cater to the needs of the Hispanic/Latino community, which is often underrepresented in medical research.

A Focus on Diversity in Liver Health Research

The launch, which occurred in July 2025, embraces a dual challenge: addressing the complexities of liver diseases while also breaking down language barriers that hinder participation in crucial medical studies. Lorraine Stiehl, CEO of ALF, emphasized the importance of diverse representation in research, stating, “Too often, non-native English speakers are excluded from vast research studies simply because of language barriers.” This sentiment underscores the foundational purpose of the new registry: to ensure that valuable data on liver diseases reflects the experiences of the entire population, regardless of their primary language.

How the Registry Works

The ALF Patient Registry serves as a digital platform where individuals over 18 years old, suffering from any type of liver disease, can share their medical histories and treatment experiences through an online survey. Participants' responses will enrich the understanding of liver disease management and contribute to the development of future therapies. Additionally, the registry actively invites those who have undergone liver transplants to join, thereby enriching the data pool with diverse patient experiences at all stages of their liver disease journey.

One of the unique features of this Spanish-language registry is its commitment to clarity and accessibility in communications. Instead of relying on simple translations, ALF collaborated with professional language services to ensure that complex medical terminology is expressed in a way that is culturally appropriate and easily understood by patients. This careful consideration sets the Spanish-language registry apart from many other health resources traditionally presented in English.

Expanding Access and Knowledge

The registry is aimed not just at data collection but also at empowering patients by providing them with a user-friendly interface to navigate their health journey. Interested individuals can easily enroll by visiting liverpatientregistry.org and selecting Spanish at the top right corner of the page. It's crucial for potential participants to avoid browser translation pop-ups to enjoy the best experience.

Helene Jordan, ALF’s National Senior Director of Research Program Management, highlighted the ongoing efforts to include everyone affected by liver disease, remarking, “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.” This initiative not only encourages participation but also aims for long-term engagement with the research activities, which may include additional studies based on individual circumstances.

Protecting Participant Privacy

The registry maintains a strong commitment to privacy, ensuring that personal information is securely protected. ALF guarantees that no identifying details, such as names or emails, will be shared, allowing participants to engage in ownership of their data.

The Significance of the Registry

The launch of the Spanish-language patient registry marks a pivotal advancement in how healthcare organizations approach health equity. It serves as a crucial reminder of the need for inclusive healthcare strategies that reach diverse communities effectively. With the support of digital health technology leader EmpiraMed, the registry stands to make a lasting impact on the research landscape, pushing boundaries towards better treatment outcomes and health equity for Hispanic and Latino populations across the United States.

Through this innovative approach, the American Liver Foundation not only fosters a deeper understanding of liver diseases but also champions the cause for marginalized communities, thereby paving the way for more comprehensive healthcare solutions in the future.

For more information on the American Liver Foundation and initiatives supporting liver health, please visit www.liverfoundation.org or call 1 800 GO LIVER (800-465-4837).