Development and pilot implementation of Iranian Hemolytic Uremic Syndrome Registry

ABSTRACT:

Background

Patients with Hemolytic Uremic Syndrome (HUS) face late diagnosis and lack of appropriate treatment because of a lack of knowledge and experience in this field. A prerequisite for such knowledge is the development of research infrastructures such as a registry system. Therefore, this study aimed to develop and describe the HUS registry in accordance with the Iranian health system and implement its software system.

Methods

We first interviewed 10 pediatric nephrologists and after analyzing the interviews, we identified the features and requirements and the data related to HUS. Then, during two rounds of the Delphi technique (the first round with 23 participants and the second round with 18 participants), the model of this registry was finalized based on the agre

SUBMITTER: Lazem M 

PROVIDER: S-EPMC9205084 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature