Publications (ENG)

All publications related to the CUREiHUS study are listed here:

Validity of the Patient Experiences and Satisfaction with Medications (PESaM) Questionnaire

This study assessed the validity and reliability of the generic module of the recently developed Patient Experiences and Satisfaction with Medications (PESaM) questionnaire in a sample of patients in the Netherlands. The PESaM questionnaire is a unique patient-reported outcome measure evaluating patient experiences and satisfaction with medications. It has been developed in conjunction with patients, ensuring coverage of domains and issues relevant from the patient’s perspective. This study has shown promising validity of the generic module of the PESaM questionnaire.

Safety and effectiviness of restrictive eculizumab regimen in patients with aHUS

Twenty aHUS patients are described who received eculizumab for a short period of time after which therapy is withdrawn. This study shows a restrictive treatment regimen is feasable. Moreover, appears even safe and (cost)effective.

Eculizumab dosing regimen in atypical HUS: Possibilities for individualized treatment.

This study provides essential insight in optimization of eculizumab dosing schemes and lessening of therapy burden for the patients and cost of the treatment.

Development and Pretesting of a Questionnaire to Assess Patient Experiences and Satisfaction with Medications (PESaM Questionnaire).

The PESaM Questionnaire is an add-on study of the CUREiHUS study to assess patient experience and satisfaction with eculizumab.

 

Publications related to STEC-HUS are listed here:

Glyco-iELISA: a highly sensitive and unambiguous serological method to diagnose STEC-HUS caused by serotype O157

Providing proof of presence of STEC infection forms the basis for differentiating STEC-HUS and atypical HUS. As the gold standard to diagnose STEC-HUS has limitations, using ELISA to detect serum antibodies against STEC lipopolysaccharides (LPS) has proven additional value. Yet, conventional LPS-ELISA has drawbacks, most importantly presence of cross-reactivity due to the conserved lipid A part of LPS. The newly described glyco-iELISA tackles this issue by using modified LPS that eliminates the lipid A part. This study shows that using glyco-iELISA to detect IgM against STEC serotype O157 has clear benefit compared to conventional LPS-ELISA, contributing to optimal diagnostics in STEC-HUS.

Fecal diagnostics in combination with serology: Best test to establish STEC-HUS

The serological anti-O157 LPS assay clearly makes a positive contribution when used in combination with standard fecal diagnostic tests to diagnose STEC-HUS and should be incorporated in clinical practice.