Interviews

Improved Survival of Patients with Alagille Syndrome and Native Liver into Adolescence: An Interview with Dominika Wojdyla about EASL 2026

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Alagille syndrome is a rare genetic disorder of the liver that occurs in approximately 1 in every 30,000 to 50,000 live births. Most existing literature in Alagille syndrome focuses on pediatric cases, but what about the roughly 80% of patients who reach adulthood?

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This past May, The Forum sent Dominika Wojdyla, a graduate student at Erasmus University Rotterdam and a member of the Forum’s Pediatric Cholestatic Liver Diseases (PCLD) program, to attend EASL 2026 in Barcelona, Spain. Wojdyla presented on outcomes for adolescent and adult populations. The work aims to identify predictors of long-term survival by analyzing real-world data and critical biomarkers, including total bilirubin and platelet counts. The work was well received at the congress and Dominika highlighted the invaluable collaboration of the Forum’s PCLD pediatric transition to adulthood working group, including Deirdre Kelly, Binita Kamath, Nikita Gupta, and especially her supervisor, Bettina Hansen, in bringing the project to life.


 

Challenges and Opportunities for Hepatitis B Research in Africa

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According to the latest estimates from the World Health Organization, hepatitis B (HBV) affects 240 million people worldwide and 64 million people in Africa. But only 1 percent of HBV clinical trials worldwide have been conducted in Africa, despite diverse HBV genotypes across the continent, as well as other circumstances that differentiate HBV in Africa from other regions.

Drs. Ekene Osakwe, a Research Associate with the HBV arm of the Forum for Collaborative Research, and Danjuma K. Adda, former president of the World Hepatitis Alliance, met on Zoom and discussed the challenges and opportunities for hepatitis B research in Africa. Both are among the authors of “Strengthening hepatitis B virus clinical research in Africa: the need for multistakeholder collaboration, funding, and political will,” in the journal Lancet Microbe. The article distills the insights from a series of multistakeholder conversations on barriers and solutions to the disparities in HBV research.

The wide-ranging conversation in this video interview, which was recorded in February 2026, touched on topics including the reasons that African countries are underrepresented in HBV clinical trials, why HBV research receives less funding than other conditions, and who should have central roles in designing and conducting clinical trials in Africa.

Dr. Adda emphasized some key themes throughout the conversation, including: the need for long-term investment by governments and pharmaceutical companies, the importance of harmonizing and streamlining regulatory approval processes, and the need to recruit African investigators and engage people living with HBV as research partners.