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Thursday, 09 November 2017 09:33

Going beyond the unknown

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The Chronic Kidney Disease of Unknown Etiology (CKDu) Consortium sets out to educate us about the international effort to fight CKDu, helping to understand the causes and slow down the impact of this mysterious form of CKD.

 

Chronic Kidney Disease of Unknown Etiology (CKDu) constitutes a fatal and progressive loss of kidney function. It has killed more than 20,000 people in a single decade in Central America alone, with Sri Lanka showing similar figures and many more deaths unaccounted for in other regions.

CKDu, like CKD, also leads to the progressive loss of kidney function. However, it is a unique condition that appears to have different causal drivers than most forms of CKD addressed in health systems worldwide.

Several studies, conducted in different countries, aim to discover what factors cause CKDu and how to prevent it. However, they are small and uncoordinated due to a shortage of resources, small sample sizes, variable sampling methods and non-standardized data sets.

Working together to unravel the causes

In November 2016, ISN brought together key opinion leaders and experts to examine published data, review the ongoing work and frameworks proposed in specific research areas and subsequently highlight the scientific ‘unknowns’ of CKDu and the next steps to tackle them appropriately.

A second meeting was held on May 10, 2017. ‘All participants agreed on the importance to continue working together as a worthwhile way to ensure knowledge sharing and a common approach towards tackling the disease,’ says Adeera Levin.

Four main Working Groups will focus on developing a common approach, data sets and methodologies to further knowledge on detection, interventions, molecular and translational studies as well as advocacy efforts.

Levin adds: ‘While the groups recognize the need for scientific independent competition, they also see the value of agreeing on common minimum data sets, key interventions and trial designs that will lead to important knowledge in real time, and a unified voice for the disproportionately disadvantaged group that CKDu affects.’

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