NCT07218536

Brief Summary

Atypical hemolytic uremic syndrome (aHUS) is a rare, progressive, and life-threatening disease that occurs at any age, with incidence rate of 0.75 to 2.0 cases per million population per year. aHUS is a thrombotic microangiopathy (TMA) commonly caused by dysregulation of the complement system, affecting several organs, especially the kidneys. aHUS can be familial or sporadic, and approximately 50% to 60% of patients have specific identifiable genetic complement mutations and antibodies. Although aHUS is a rare disease, it has a significant impact on the quality of life because of its poor prognosis: a 25% global mortality rate; more than 50% of untreated patients advance to endstage renal disease (ESRD); and more than 75% of adults with renal failure require prompt dialysis. The risk of relapse is also high in many patients, either in the native or transplanted kidneys, so long-term management and close monitoring are essential. Advancements in aHUS therapies, especially the availability of anti-complement therapy, have enhanced the natural course of aHUS through hematologic remission induction, kidney function stabilization or improvement, and graft failure prevention. Since complement inhibitors are still unavailable in Egypt, it is important to understand the aHUS manifestations of pediatrics and adults in Egyptian hospitals, aiming for early diagnosis and proper management. In this study, we primarily aim to describe the aHUS burden on the patients by gathering their demographic and clinical characteristics, documented disease course, and long-term complications. Our secondary objectives include an estimate of the prevalence of patients diagnosed with aHUS out of all patients with TMA and gathering information about the clinical outcomes of available therapies in real-world settings, as there is no data from the country on aHUS management.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
200

participants targeted

Target at P75+ for all trials

Timeline
5mo left

Started Oct 2025

Shorter than P25 for all trials

Geographic Reach
1 country

8 active sites

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress59%
Oct 2025Sep 2026

First Submitted

Initial submission to the registry

October 1, 2025

Completed
12 days until next milestone

Study Start

First participant enrolled

October 13, 2025

Completed
7 days until next milestone

First Posted

Study publicly available on registry

October 20, 2025

Completed
12 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 30, 2026

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 30, 2026

Last Updated

April 16, 2026

Status Verified

April 1, 2026

Enrollment Period

12 months

First QC Date

October 1, 2025

Last Update Submit

April 15, 2026

Conditions

Outcome Measures

Primary Outcomes (1)

  • Demographic and clinical characteristics of patients with aHUS.

    Duration between the first aHUS treatment initiation and aHUS diagnosis

    10 Years

Secondary Outcomes (4)

  • The prevalence of patients diagnosed with aHUS

    10 Years

  • clinical outcomes of current treatment

    10 Years

  • aHUS Treatment Patterns

    10 Years

  • aHUS Treatment Outcomes

    10 Years

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Patients diagnosed with TMA between 01-Jan-2010 and 31-Dec-2023 regardless of administered treatment. Medical records of all patients fulfilling the eligibility criteria will be collected.

You may qualify if:

  • Male or female patients aged one month or older who have been diagnosed with TMA between 01-Jan-2010 and 31-Dec-2023.

You may not qualify if:

  • None. All records of patients with TMA will be screened for aHUS diagnosis.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (8)

Research Site

Al Mansurah, Egypt

NOT YET RECRUITING

Research Site

Alexandria, Egypt

RECRUITING

Research Site

Asyut, Egypt

RECRUITING

Research Site

Cairo, Egypt

RECRUITING

Research Site

New Cairo, Egypt

NOT YET RECRUITING

Research Site

New Cairo, Egypt

RECRUITING

Research Site

Tanta, Egypt

RECRUITING

Research Site

Zagazig, Egypt

RECRUITING

MeSH Terms

Conditions

Atypical Hemolytic Uremic Syndrome

Condition Hierarchy (Ancestors)

Hemolytic-Uremic SyndromeUremiaKidney DiseasesUrologic DiseasesFemale Urogenital DiseasesFemale Urogenital Diseases and Pregnancy ComplicationsUrogenital DiseasesMale Urogenital DiseasesAnemia, HemolyticAnemiaHematologic DiseasesHemic and Lymphatic DiseasesThrombotic MicroangiopathiesThrombocytopeniaBlood Platelet DisordersCytopenia

Central Study Contacts

AstraZeneca Clinical Study Information Center

CONTACT

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
RETROSPECTIVE
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

October 1, 2025

First Posted

October 20, 2025

Study Start

October 13, 2025

Primary Completion (Estimated)

September 30, 2026

Study Completion (Estimated)

September 30, 2026

Last Updated

April 16, 2026

Record last verified: 2026-04

Data Sharing

IPD Sharing
Will share

Qualified researchers can request access to anonymized individual patient-level data from AstraZeneca group of companies sponsored clinical trials via the request portal Vivli.org. All requests will be evaluated as per the AZ disclosure commitment: https://astrazenecagrouptrials.pharmacm.com/ST/Submission/Disclosure. Yes, indicates that AZ are accepting requests for IPD, but this does not mean all requests will be shared.

Time Frame
AstraZeneca will meet or exceed data availability as per the commitments made to the EFPIA PhRMA Data Sharing Principles. For details of our timelines, please rerefer to our disclosure commitment at https://astrazenecagrouptrials.pharmacm.com/ST/Submission/Disclosure.
Access Criteria
When a request has been approved AstraZeneca will provide access to the anonymized individual patient-level data via secure research environment Vivli.org. Signed Data Usage Agreement (non-negotiable contract for data accessors) must be in place before accessing requested information.
More information

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