European Registry for Children on Renal Replacement Therapy
The ESPN/ERA Registry collects data on KRT at an annual basis via the national and regional renal registries in Europe. To achieve that the same data are collected in all countries, but also to stimulate data collection, we made a priorization of suggested data collection, based on 3 levels, which will be explained in more detail. We have made an internet-based data collection tool to enter data here. However, it is of course possible to merge your database with the ESPN database. Please contact us via firstname.lastname@example.org to receive more information on this.
The data is divided into 2 levels-baseline data which is essential and then extended data which are more detailed and will not be possible to collect from some countries initially but we hope that in the future we will all be collecting this detailed information.
Baseline or essential data are, as the word suggests, critical. Please always provide a patient identifier, and the date. At baseline, please provide also the treatment modality, cause of renal disease, sex, month and year of birth, date of first renal replacement therapy and arrival. We also would like to know changes of therapy, death and cause of death, and transfers to other countries or registries. Extended data are highly preferred data, but not essential for the analysis. However, we highly recommend collection of these variables. Examples of extended data are comorbidities, serum creatinine levels, weight and height.
After retrieval of the data, a country report is send to the countries with benchmarking data. A list of the benchmarking items is as follows.
Data can be contributed to the registry via existing registries, or via the internet- based data collection system. If you would like to receive an entrance code to the internet-based datacollection, please contact us. Furthermore, Marjolein Bonthuis is very willing to help to import data from established databases directly into the new database without re-entering the data. If you would like to have different variables into this database, she is also willing to help you to add variables to this database. Please contact her via email@example.com in case you need any help or assistance.