ESPN/ERA-EDTA Registry

European Registry for Children on Renal Replacement Therapy

 

European Society for Paediatric Nephrology
European Renal Association - European Dialysis and Transplant Association
Department of Medical Informatics
Academic Medical Center
European Union

Data collection

The ESPN/ERA-EDTA Registry collects data on RRT 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 datacollection, we made a priorization of suggested datacollection, based on 3 levels, which will be explained in more detail. We have made an internet-based datacollection tool to enter data here. However, it is of course possible to merge your database with the ESPN database. Please contact us via espn-reg@amc.uva.nl 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, date 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. Extended data are highly preferred data, but not essential for the analysis. Examples of extended A data are comorbidities, serum creatinine levels, weight and height. However, we highly recommend collection of these variables.

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.
anaemia treatment: % of dialysis patients on ESA, % of transplant patients on ESA, % of dialysis patients with Hb levels blow 10g/l, % of transplant patients with Hb levels below 10 g/l
hypertension treatment: % of dialysis patients with hypertension, % of transplant patients with hypertension, mean z-score systolic blood pressure for dialysis patients, mean z-score systolic blood pressure for transplant patients, mean z-score diastolic blood pressure for dialysis patients, mean z-score diastolic blood pressure for transplant patients
growth: % of dialysis patients with a height z-score below 2, % of transplant patients with a height z-score below 2, Mean height z-score among dialysis patients, Mean height z-score among transplant patients
lipid metabolism: mean total cholesterol dialysis patients, mean total cholesterol transplant patients.
nutrition: % of patients with obesity, % of patients with undernutrition.

Data can be contributed to the registry via existing registries, or via the internet- based datacollection 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 espn-reg@amc.uva.nl in case you need any help or assistance.