“The core advantage of data is that it tells you something about the world that you didn’t know before.” Hilary Mason American entrepreneur and data scientist The modern hospital, for all its gleaming technology, remains a collection of fleeting moments and fragmented stories. To weave these isolated episodes into a tapestry of true understanding, we are offered the recourse of registries. This repository of shared patient experiences is effectually an organized system that collects uniform data on patients with a specific condition, within which we may often find the observational data necessary to transform the abstract hope of disease understanding, its burden and eventual healing, into evidence-based reality. The value of these systems lies not in metaphor, but in their capacity to provide real-world evidence that can inform health decisions made by patients, providers, and payers alike. For individuals grappling with metabolic dysfunction-associated steatotic liver disease (MASLD), a condition affecting one in three adults worldwide,1 such a registry would become a vital tool. This insight is crucial, not just for understanding the disease and its natural history, but for developing the tailored therapeutic strategies needed for different patients. Over the past decade, MASLD has rapidly become one of the defining noncommunicable disease challenges for the Middle East and North Africa (MENA) region.2 Global modelling suggests that several MENA countries now rank among those with the highest age standardized MASLD prevalence worldwide, reflecting a convergence of obesity, type 2 diabetes, and other metabolic risk factors that are highly prevalent across the region.1,2 In a recent systematic review and metaregression of data from 21 MENA countries, the estimated prevalence of MASLD in the general population was approximately 39%, increasing to almost 69% among individuals with type 2 diabetes, with prevalence exceeding 40% in 10 countries and reaching 45.37% in Kuwait, 45.0% in Egypt, 44.4% in Qatar, and 43.3% in Jordan.3 Two decade trend analyses further demonstrate rising MASLD-related cirrhosis and hepatocellular carcinoma (HCC) across the MENA region between 2010 and 2021, signaling a growing burden on transplant, oncology, and critical care services if current trajectories are not altered.4 Despite these alarming figures, the region still operates largely in the dark regarding who develops progressive disease, how patients move through care pathways, and which interventions are more effective in real-world practice.5 In a recent Delphi-based research and action priority agenda for MASLD in the MENA region, experts from multiple countries highlighted profound gaps in epidemiology, longitudinal outcomes, and health system performance, and explicitly prioritized the establishment of national and regional MASLD registries as a top research and policy need.6 These priorities are echoed by mapping models of care across 17 MENA countries, which showed that most respondents reported the absence of any national MASLD strategy, limited implementation of multidisciplinary models of care, and fragmented referral and follow up pathways, leading to delayed diagnosis and inconsistent quality of care.7 The challenges are not confined to health system structure. A recent survey of healthcare professionals from Saudi Arabia, Egypt, and Türkiye showed that MASLD knowledge remains suboptimal, with important gaps in understanding of disease epidemiology, risk stratification, and non-invasive testing among both primary care physicians and specialists.8 Economic modelling work focused specifically on the MENA region suggests that, without earlier detection and better risk stratification, MASLD will generate a substantial and growing clinical and economic burden, particularly through decompensated cirrhosis, HCC, and cardiovascular complications.9 Frailty, sarcopenia, and multimorbidity further complicate the clinical picture in many countries of the region, where MASLD frequently coexists with diabetes, cardiovascular disease, and obesity in ageing populations.10 Taken together, these findings underscore a simple reality: current data sources and ad hoc cross sectional studies are inadequate to plan efficient services, allocate resources, or evaluate emerging therapies in a disease that is both common and heterogeneous. Experiences from other disease areas show that registries can transform such data deserts into learning health systems. In oncology, recent roadmaps for cancer registration in Africa have argued that high quality clinical and population-based registries are foundational for understanding real-world burden, monitoring outcomes, guiding screening policies, and catalyzing research, even in the face of major constraints in infrastructure and funding.11 In the field of rare liver diseases, European consortia have demonstrated how carefully designed registries can harmonize definitions, standardize data elements, and underpin multicenter collaboration.12 A subsequent blueprint for rare liver disease registries highlighted the importance of integrating theoretical, technical, and maintenance phases, including robust governance, data standards, and sustainability planning, to ensure that registries remain useful beyond initial pilot projects.13 These lessons are directly relevant to MASLD, which, while not rare, shares the need for consistent phenotyping, long-term follow-up, and cross-border collaboration. Importantly, the argument for MASLD registries within the MENA region is not purely technical; it is also deeply strategic. The regional research and action agenda emphasized that registries are indispensable to characterize the human and economic burden, to define and refine models of care, identify disparities of care, provide data for quality improvement initiatives, including for existing and evolving treatments, and to monitor the implementation of policies over time.6 The same agenda, led by the Steatotic Liver Diseases Study Foundation in Middle East and North Africa (SLMENA), proposed that national and regional MASLD registries should collect standardized data on demographics, metabolic risk factors, noninvasive fibrosis assessments, comorbidities, and liver-related and extrahepatic outcomes, while being flexible enough to integrate emerging therapies and biomarkers.6 This vision moves beyond static prevalence estimates toward dynamic, longitudinal datasets that can answer pressing questions on progression, treatment response, and health system performance. As shown in Figure 1, a MASLD registry can be conceptualized as a learning cycle in which diverse clinical data sources feed a central, standardized repository that generates outputs for epidemiology, quality improvement, policy, and resource planning across the MENA region.Figure 1: Conceptual framework for a MASLD registry in the MENA region. Data inputs from hospitals, specialist clinics, primary care, and laboratories feed a central registry built on standardized data elements. Registry outputs support epidemiological surveillance, benchmarking of care quality, policy development, and resource planningThe mapping of MASLD models of care across 17 MENA countries provides a useful starting point ascertaining how registries could be embedded into routine clinical practice. In that survey, 73.1% of respondents reported the absence of a national MASLD strategy, and many highlighted fragmented referral and follow up pathways, limited access to transient elastography, and inconsistent implementation of evidence-based guidelines.7 Such fragmentation is precisely the environment in which registries can add value: by illuminating where patients are lost between primary care, diabetology, cardiology, and hepatology; by documenting real-world use of noninvasive tests and imaging; and by capturing variations in outcomes across centers and countries. By linking registry data to economic models, policymakers can also evaluate the cost effectiveness of different screening and care strategies in their own health system context.9 Saudi Arabia provides an instructive example of how national guidance can set the stage for registry development. A recent modified Delphi-based consensus in this journal provided detailed recommendations for MASLD screening, risk stratification, and management in the Saudi context, including thresholds for Fibrosis 4 score, transient elastography, and magnetic resonance elastography to define advanced fibrosis and trigger specialist referral.14 These recommendations implicitly define key data elements that any national MASLD registry should capture, such as noninvasive test values, risk categories, and treatment choices. If aligned with such consensus standards, a Saudi MASLD registry could serve as a model for other Gulf and MENA countries, demonstrating how guideline-based pathways perform in real-world practice and where they need adjustment. Designing registries that truly serve patients and health systems in the MENA region will require careful attention to methodology and governance. Experiences from rare liver disease registries in Europe emphasize the need for a clear purpose, a minimal yet meaningful core dataset, and harmonized definitions to ensure comparability across centers.13 Similarly, guidance on creating effective clinical registries highlights the importance of strong stakeholder engagement, transparent inclusion criteria, data quality procedures, and mechanisms for feedback to clinicians and policymakers.12 For MASLD in the MENA region, any registry design should be pragmatically aligned with existing information systems, taking into account the realities of paper-based records in some settings, heterogeneous electronic medical records in others, and variable availability of noninvasive tests across urban and rural facilities. At minimum, a regional MASLD registry framework should allow each participating country to capture standardized information on demographics, metabolic risk factors, body mass index and waist circumference, comorbidities such as diabetes and cardiovascular disease, noninvasive fibrosis scores, imaging findings, and key outcomes including incident cirrhosis, decompensation, HCC, and death. This core clinical dataset can be expanded, where feasible, to include patient reported outcomes, frailty measures, and quality-of-life indices, which are increasingly recognized as critical in MASLD management.10 Since MASLD is tightly linked to cardiometabolic health, strong interfaces with diabetes, cardiology, and primary care datasets will be essential. The experience of MASLD management consensus in Saudi Arabia, which brought together hepatologists, endocrinologists, and primary care physicians, illustrates the importance of multidisciplinary ownership for such initiatives.14 One concern often raised in lower and middle income settings is that registries may be too resource intensive. However, experience from cancer registries developed in several developing countries shows that, even in resource constrained environments, phased approaches that start with a limited number of centers, focus on a core dataset, and leverage existing hospital information systems can be both feasible and impactful.11 In the MENA region, SLMENA and regional liver societies are well placed to coordinate similar phased rollouts for MASLD, starting with pilot registries in centers of excellence and gradually expanding participation. The presence of active professional networks, ongoing MASLD research collaborations, and existing consensus processes is a major asset that should be harnessed rather than duplicated.6 For clinicians, participation in registries should not be seen as an administrative burden, but as an opportunity to better understand their own practice and outcomes. Registry reports can provide each center with benchmark data on patient characteristics, timeliness of diagnosis, uptake of non-invasive tests, adherence to guidelines, and short- and long-term outcomes. These data can then inform local quality improvement initiatives, training programs, and resource allocation decisions. For researchers, registries offer a platform to identify cohorts for clinical trials, nested observational studies, and implementation research tailored to the MENA context. For policymakers, registries provide real-world evidence needed to justify investments in non-invasive tests, multidisciplinary clinics, and new therapies as they become available.9 Nonetheless, the window of opportunity remains narrow. The MENA region is simultaneously facing rapid demographic change, high rates of obesity and diabetes, and evolving therapeutic options for MASLD and metabolic dysfunction-associated steatohepatitis. The implementation of robust registries can transform this challenge into a collective effort. By illuminating the complex pathways of the disease and guiding the development of new treatments and standards of care, these registries would provide a vital mechanism for improving patient outcomes on a grand scale. Without registries, new interventions will be implemented in a vacuum of local evidence, risking both inefficiency and inequity. With well-designed, regionally coordinated registries, the MENA region countries can instead move toward a learning health system in which data generated in everyday practice continuously feeds back into better guidelines, better policies, and better patient outcomes.
El-Kassas et al. (Wed,) studied this question.