Welcome

This is a multi-purpose online registry developed for the registration of data about children with idiopathic nephrotic syndrome complicated by frequent relapses, steroid dependence or steroid resistance.

The Nephrotic Syndrome Registry (NSR) was developed in close collaboration with the ESPN-WINS (European Working group on Idiopathic Nephrotic Syndrome) and NephcEurope .

Registration of data
There are three levels of registration: minimum, customized and complete registration. The latter could suffice as an electronic patient record. Data can be registered regarding all aspects of disease e.g. presentation of disease, hospital visits, relapses, biopsies, therapy and genetic analysis.

In addition, your patients will be able to acquire an account to register data regarding home measurements of proteinuria, provide an extensive medical history, maintain a diary on prescribed medication, adverse drug reactions and height / weight measurements. This data will be viewable by their nephrologist as well.

System requirements
In order to use the Nephrotic Syndrome Registry web application you will need a modern browser (e.g. Internet Explorer 7 / 8, Firefox). Javascript has to be enabled and if you want to be able to view registration statistics you will need to have Adobe Flash player installed as well (already installed on most computers).

Sign up
As a pediatric nephrologist you can sign up for an account at the Nephrotic Syndrome Registry. Please click the tab "Sign up" above to start the sign up process and become a registering member of the Nephrotic Syndrome Registry.

We are looking forward to welcome you as a contributing member of the Neprotic Syndrome Registry,

The NSR registry team