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In 2013 the Pan American Health Organization (PAHO) acknowledged that Latin America (LA) faced an important burden of noncommunicable diseases (NCD). Furthermore, while leading causes of chronic kidney disease (CKD), such as diabetes, continue to grow and people over 60 years is projected to reach 220 million by 2060, CKD disability-adjusted life years already increased 58% in the last 20 years in the region. As part of PAHO’s strategic plan they established a goal of ≥ 700 patients per million population (pmp) in kidney replacement therapy (KRT) per country. Assuming that to achieve this the development of a system that allowed monitoring and evaluation of this process was needed; it became clear that the main instrument to measure the outcome was a population-based registry. Therefore, they established that the Latin American Society of Nephrology and Hypertension (SLANH) would be a Non-Governmental Organization in official relations with PAHO. To date twenty countries are affiliated to SLANH. The development of KRT in them was heterogenous. Brazil was the first country on deliver dialysis in 1947 while El Salvador was the last one almost 30 years later. Argentina performed their first kidney transplant in 1957, while Nicaragua performed it in 2000. By 2013 the overall population in KRT was 660 pmp, varying from 220 pmp in Nicaragua to 1847 pmp in Puerto Rico, and six countries had ≥ 700 pmp under either dialysis or kidney transplant.
To describe the actions taken to promote and consolidate the development of LA national registries. To describe the evolution and status of national renal registries from LA countries from 2014 to 2021
25 training courses and workshops were held between 2014 to 2016. The aims and methodology of these trainings are detailed in Table 1. By 2016 the main reported problem was that nephrology societies depend on the strength of the relationship between each of the main stakeholders: National Nephrology Societies, Ministry of Health, and Social Security Service, as well as the continuity of the health care policies. In 2017 20 countries participated in a regional workshop and presented a situational analysis of their national registry. Although Argentina, Colombia, Puerto Rico, Uruguay, and Cuba had the greatest improvement, still Mexico and Brazil registries were partial and did not cover the entire country, while Honduras, Bolivia and Costa Rica suggested little or no progress. The delegates that participated in the workshop and the SLANH Registry Committee developed a tool to classify the registries according to their characteristics (Figure 1). This tool allowed to diagnose the status of each registry while stablishing the main goal a registry should achieve. By 2017 only two national registries had a category 5, while 8 countries where a category 1. In 2021 a plenary session was held where the countries expressed, for example, the usefulness and importance of their registries during the COVID-19 pandemic to guarantee access to vaccines and tailor health policies for their patients. By 2021 7 countries improved their registries either to category 2 or 3. None of the registries worsen their quality. Most countries raised their KRT prevalence during the followed period. (Figure 2). 7 countries raised their prevalence adding a total of 13 countries that achieved the goal of ≥700 pmp. The prevalence of KRT in LA increased from 660 pmp in 2013 to 872 pmp in 2021.
Table 1.
List of Aims and methodology of workshops.
Provide methodological support to strengthen the capacity of the country's national dialysis and kidney transplant registry.
Secure participation of at least one representative of PAHO, a representative of Ministry of Health, a representative of the National Society of Nephrology and the current or potential delegates of the National Registry.
Field visit to a dialysis centre (possibly public) where the case report originates for registration.
Practical teaching activity of evaluation in situ with local actors.
Define the patient of interest and understand the operational definition.
Know the flowchart and the methods to compile the information of a dialysis and transplant registry
Prepare an annual data collection form.
Perform basic statistical analysis of variables.
Calculate incidence, prevalence, morbidity, and mortality rates.
Conclusions
Renal registries provide information to plan, deliver, and evaluate renal services. The most recurring and important challenge is the lack of a regulatory framework, including the lack of resources. In several countries the registry is voluntary and only managed by nephrology societies, without the participation of the health authority and human or financial resources to ensure its sustainability over time. Registries that show an advanced degree of development have institutionalized their operation.