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Updated: Nov 4, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
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Lessons learned from hemolytic uremic syndrome registries: recommendations for implementation.

Mina Lazem1, Abbas Sheikhtaheri2, Nakysa Hooman3

  • 1Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.

Orphanet Journal of Rare Diseases
|May 26, 2021
PubMed
Summary

Registries for Hemolytic Uremic Syndrome (HUS) are crucial for research and treatment discovery. This study provides a framework to guide the development and implementation of effective HUS registries, improving data collection and quality.

Keywords:
Hemolytic uremic syndromeRegistryThrombotic microangiopathy

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Area of Science:

  • Nephrology
  • Hematology
  • Epidemiology

Background:

  • Hemolytic uremic syndrome (HUS) is a rare triad of thrombocytopenia, microangiopathic hemolytic anemia, and acute kidney injury.
  • There is a significant need for research into HUS treatments.
  • HUS patient registries serve as vital information infrastructure for advancing HUS research.

Purpose of the Study:

  • To identify and compare features of existing Hemolytic Uremic Syndrome (HUS) registries.
  • To present a guide for the development and implementation of HUS registries.

Main Methods:

  • Analysis of the purposes, data sets, and data quality assessment strategies of existing HUS registries.
  • Comparison of patient inclusion/exclusion criteria and data collection methods (prospective vs. retrospective).

Main Results:

  • Registry purposes varied, including clinical, research, and epidemiological aims.
  • Data quality assurance involved multiple strategies, such as real-time evaluation and physician participation.
  • Registries differed in patient populations (e.g., atypical HUS, age groups) and data collection approaches.

Conclusions:

  • A learning framework for HUS registry development and implementation is proposed.
  • The framework offers guidance on registry purposes, data sets, quality assurance, and data sources.
  • This framework aims to assist researchers in establishing robust HUS registries.