ational observational study to monitor the new guideline concerning treatment of atypical hemolytic uremic syndrome
- Conditions
- atypische hemolytisch uremisch syndroom, atypical hemolytic uremic syndrome, complement system, eculizumab, restrictive treatment regimen, orphan drugs, weesgeneesmiddel
- Registration Number
- NL-OMON22544
- Lead Sponsor
- Radboud university medical center
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Pending
- Sex
- Not specified
- Target Recruitment
- 50
Inclusion Criteria
1. Patients of all ages, suspected of or diagnosed with aHUS
2. Treated conform the new Dutch guideline for aHUS.
Exclusion Criteria
1, Subject and/or his parents is not able or willing to sign the Informed Consent before start of the study.
2. Patients with other etiological forms of HUS than aHUS
Study & Design
- Study Type
- Observational non invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Monitoring and evaluation of the Dutch guideline for treatment of aHUS in children and adults during two years.
- Secondary Outcome Measures
Name Time Method Two add-on studies are submitted with this research protocol.<br /><br>1. To gather more inside in the pharmacokinetics and dynamics of eculizumab.<br /><br>2. To test the psychometric properties of the questionnaire: medication-related patient-reported experience measures (M-PREM) and the expectations measure that are aimed to better understand patient expectations, experiences and satisfaction with medications.