CUREiHUS

National observational study to monitor the guideline concerning treatment of atypical hemolytic uremic syndrome - CUREiHUS

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON44007

Enrollment

250

Registered

2015-11-29

Start date

2016-08-10

Completion date

Unknown

Last updated

2025-09-08

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

acute kidney failure, complement mediated hemolytic uremic syndrome

Interventions

None listed

Eligibility

Age

No minimum to 99 Years

Inclusion criteria

Inclusion criteria: 1. Patients of all ages, suspected of or diagnosed with aHUS  2. Treated conform the Dutch guideline for aHUS.  3. Subject and/or his parents is able and willing to sign the Informed Consent before screening evaluations.   

Exclusion criteria

Exclusion criteria: 1, Subject and/or his parents is/are not able or willing to sign the Informed Consent before start of the study.  2. Patients with other etiological forms of HUS than aHUS

Design outcomes

Primary

Measure	Time frame
During twenty years the guideline will be monitored and evaluation will take place every four years. With the guideline we aim to demonstrate that dosing regimens can be safely adapted or even discontinued, and hereby optimizing the treatment of aHUS patients. According the guideline, most aHUS patients will be treated with eculizumab during three months and after this period therapy will be discontinued. Clinical and laboratorial data of the patients will be evaluated by the National Working Group aHUS. Data are assembled in an online webbased database, Castor.	—

Measure

Time frame

During twenty years the guideline will be monitored and evaluation will take place every four years. With the guideline we aim to demonstrate that dosing regimens can be safely adapted or even discontinued, and hereby optimizing the treatment of aHUS patients. According the guideline, most aHUS patients will be treated with eculizumab during three months and after this period therapy will be discontinued. Clinical and laboratorial data of the patients will be evaluated by the National Working Group aHUS. Data are assembled in an online webbased database, Castor.

—

Secondary

Measure	Time frame
One add-on study is submitted with this research protocol. 1. Completing the genetic complement analysis of aHUS patients.	—

Countries

Netherlands

Contacts

Public ContactA.L. Steeg

Radboud Universitair Medisch Centrum

CUREiHUS@radboudumc.nl024 361 4415

Outcome results