Alport Therapy Registry - European Initiative Towards Delaying Renal Failure in Alport Syndrome

Launched by UNIVERSITY HOSPITAL GOETTINGEN · Feb 26, 2015

Keywords

ClinConnect Summary

The European Alport Therapy Registry is a study focused on Alport syndrome, a hereditary kidney disease that can lead to serious kidney problems, including the need for dialysis. The goal of this research is to see if certain medications, like ACE inhibitors, can help delay the time it takes for patients to need dialysis and improve their overall life expectancy. This study is observational, meaning researchers will watch and collect information about patients and their experiences without giving them any specific treatment.

To be eligible for this study, participants must have a confirmed diagnosis of Alport syndrome, either through a kidney biopsy or genetic testing. The study is open to both affected males and females of all ages. Participants will be asked to provide informed consent before joining the study. Those who have not been confirmed to have Alport syndrome or have donated a kidney to a family member are not eligible. For families affected by Alport syndrome, this study presents an opportunity to contribute to important research that may help improve outcomes for future generations.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Diagnosis of Alport syndrome (AS) by kidney biopsy or mutation analysis (or both).
• • Any type of genetic variant is accepted for X-linked, autosomal or digenic Alport syndrome (COL4A3, 4 or 5 genes).
• Exclusion criteria:
• • Patients not willing to give informed consent. Patient with suspected diagnosis, whcih cannot be confirmed.