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Enrolling By InvitationNCT04246060

Observational Study to Assess the Quality of Life in Nephropathic Cystinosis Patients

Multicentre, Ambispective, Observational, Real Life Study to Assess the Quality of Life Effectiveness of Extended Release (ER) Oral Cysteamine Therapy (Procysbi) in Belgian Patients Suffering From Nephropathic Cystinosis

Status
Enrolling By Invitation
Phase
Study type
Observational
Enrollment
31 (estimated)
Sponsor
Chiesi SA/NV · Academic / Other
Sex
All
Age
Healthy volunteers
Not accepted

Summary

Most of the real world evidence data related to efficacy of cysteamine therapy is retrospective. This study is a ambispective study to investigate the impact of cystine depletion therapy on the quality of life of patients and their parents.

Conditions

Interventions

TypeNameDescription
DRUGCysteamine BitartrateERT

Timeline

Start date
2020-07-31
Primary completion
2022-07-01
Completion
2026-07-01
First posted
2020-01-29
Last updated
2021-11-29

Locations

7 sites across 1 country: Belgium

Regulatory

Source: ClinicalTrials.gov record NCT04246060. Inclusion in this directory is not an endorsement.

Observational Study to Assess the Quality of Life in Nephropathic Cystinosis Patients (NCT04246060) · Clinical Trials Directory