Data collection

The ESPN/ERA Registry collects data on paediatric KRT at an annual basis via the national and regional renal registries in Europe. To achieve the same data are collected in all countries, but also to stimulate data collection, we made a prioritization for suggested data collection, based on 3 levels, which are explained in more detail below. An internet-based data collection tool to enter data is available 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.

Baseline or essential data are, as the word suggests, critical. Please always provide a patient identifier, and the date for each measurement (e.g. record). At baseline, please provide also the treatment modality, cause of kidney disease, sex, month and year of birth, date of first kidney replacement therapy and arrival. We also would like to know changes of therapy, and if applicable death and cause of death, and transfers to other countries or registries. Extended data are highly preferred data, but not essential for participation in the Registry. 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 sent to the countries with benchmarking data. A list of the benchmarking items, stratified by treatment modality (i.e. dialysis or kidney transplantation) is as follows:

Anaemia: % of patients treated with ESA, and the % of patients with Hb levels below 10 g/l.

Blood pressure: % of patients with hypertension, mean z-score systolic blood pressure for dialysis patients, mean z-score of systolic and diastolic blood pressure.

Growth: % of patients with a height z-score below -2, mean height z-score.

Lipid metabolism: mean total cholesterol.

Nutrition: % of patients with obesity, and % of patients with undernutrition.

Data can be contributed to the ESPN/ERA Registry via existing (national) registries, or via the internet- based data collection system. If you would like to receive an entrance code to the internet-based data collection environment, please contact us. Furthermore, Iris Montez de Sousa 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.