esCapeKD subregistry
General Information
The esCapeKD subregistry is an established pediatric chronic kidney disease (CKD) cohort study developed by the ESCAPE Network in Europe. It aims to build upon prior pediatric CKD studies, such as the original ESCAPE trial and 4C study, by collecting contemporary real-world data on the natural history, progression, and treatment of CKD in children. The subregistry focuses on children aged 3 months to 17 years with CKD stages 2–4, providing an updated, prospective European cohort that bridges gaps left by previous studies. It complements the existing ERKNet core registry with more detailed clinical, biochemical, and biobanking data.
Objective
Main Objectives:
To collect longitudinal, real-world data about the natural history of pediatric CKD progression under current standard-of-care therapies.
To facilitate and support the identification and access to suitable pediatric patients for upcoming interventional trials on new therapies.
To identify risk factors and novel biomarkers for CKD progression through biobanking and bioanalysis.
Research Questions:
What are the key predictors of CKD progression in pediatric patients?
How do comorbidities, medications, and proteinuria affect long-term renal outcomes?
Can new biomarkers improve risk stratification in pediatric CKD?
What is the effect of current treatments on hospitalization and quality of life?
Data collection
Population Characteristics:
- Pediatric patients (age 3 months to 17 years) with CKD stage 2b–4 (eGFR 15–75 ml/min/1.73m2).
- Pediatric patients with eGFR between 75 – 90 ml/min/1.73m2 (CKD 2a) and significant proteinuria (uPCR >0.5 g/g).
Inclusion Criteria:
Confirmed diagnosis of CKD with appropriate GFR/proteinuria levels.
Exclusion Criteria:
- eGFR < 14 ml/min/1.73m2
- Patients who have initiated dialysis or received a kidney transplant at the time of enrollment.
Frecuency: Data collection every 3,6 to 12 months depending on eGFR.
Collected Data includes:
Demographic/Basic Data: Age, gender, diagnosis, CKD stage.
Clinical/Biochemical Data: Creatinine, eGFR, proteinuria, metabolic panel, hospitalization history, comorbidities.
Medications: All CKD-related therapies, including antihypertensives and phosphate binders.
Biobanking: Annual collection of DNA, plasma, serum, and urine samples.
Visit Data / Follow-up: eGFR, clinical course, outcomes until dialysis/transplant.
Biobank Location: Centralized in Heidelberg.
User Manual
Study manuals and training for local study coordinators are provided here.
User Training Day | 3rd April 2024
The first ERKReg dRTA Subregistry User Day was held virtually on 13th April. The event attracted more than 50 participants and provide an in-depth introduction to the Subregistry, discuss its research potential, and offer advanced training on its specifications.
Recording avaliable click to watch
Contact Person
Giulia Bassanese Giulia.basanesse@med.uni-heidelberg.de
Sheila Abukayo Murunga SheilaAbukayo.Murunga@med.uni-heidelberg.de
