MENAT-IEI-RCR Registry

Advancing collaboration, discovery, and patient outcomes through a regional registry for inborn errors of immunity.

About the Registry

The MENAT-IEI-RCR Registry is a collaborative regional initiative designed to collect standardized deidentified clinical, genetic, laboratory, treatment, and outcome data from individuals living with inborn errors of immunity (IEI) across the Middle East, North Africa, and Türkiye.

Registry Goals

• Understand Disease Burden
  Define epidemiology and clinical characteristics across the region.
• Accelerate Research
  Support multicenter studies and translational research initiatives.
• Improve Patient Care
  Benchmark outcomes and promote evidence-based practice.
• Enable Collaboration
  Connect clinicians, scientists, and institutions across MENAT countries.

What Data Are Collected?

• Clinical Information: Diagnosis, manifestations, treatments, and outcomes.
• Genetic Data: Molecular diagnoses and genotype-phenotype correlations.
• Research Metrics: Longitudinal data supporting clinical and translational studies.
• All data is deidentified at the point of data entry into the registry

Who Can Participate?

Healthcare institutions, clinicians, researchers, and collaborating centers involved in the diagnosis, treatment, or study of patients with IEI.

Why It Matters

The registry aims to improve understanding of regional disease patterns, facilitate earlier diagnosis, support clinical trials and observational studies, foster precision medicine approaches, and ultimately improve outcomes for patients and families affected by IEI.