A Spanish version for the new ERA-EDTA coding system for primary renal disease.

Background: The European Renal Association and the European Dialysis and Transplant Association (ERA-EDTA) have issued an English-language new coding system for primary kidney disease (PKD) aimed at solving the problems that were identified in the list of "Primary renal diagnoses" that has been in use for over 40 years.

Purpose: In the context of Registro Español de Enfermos Renales (Spanish Registry of Renal Patients, [REER]), the need for a translation and adaptation of terms, definitions and notes for the new ERA-EDTA codes was perceived in order to help those who have Spanish as their working language when using such codes.

Methods: Bilingual nephrologists contributed a professional translation and were involved in a terminological adaptation process, which included a number of phases to contrast translation outputs.

Consensus on the criteria needed for creating a rare-disease patient registry. A Delphi study.

Background: Patient registries (PRs) are important tools for public-health surveillance and rare-disease research. The purpose of this study is to identify the most important criteria for the creation of a rare-disease PR that could be used by public-health authorities to develop health policies.

Methods: A consensus-development Delphi study was used, with participants selected for their expertize in rare diseases and registries.