ARegPKD is a prospective and retrospective, international, multicenter observational study of patients suffering from ARPKD. With the support of multiple scientific societies and patient support groups ARegPKD follows the clinical course of ARPKD patients through pseudonymous web-based data entry with yearly follow-ups and a special focus on European countries. Associated biobanking aims to facilitate translational research approaches.
- Clinical diagnosis of ARPKD at any age
- Informed consent
- Diagnosis of any other cystic kidney disease
Max C. Liebau, MD