Chronic Kidney Disease

Ambition

Our ambition is to improve clinical and patient relevant outcomes for patients with CKD by focusing on:

• Understanding the aetiology of progression
• Prediction of poor outcomes and identification of patients with high risk
• Implementation and proper use of Patient Reported Outcome Measures (PROMs) in research and clinical practice

We do this by organising and using data from large national and international cohorts and registers, with focus on proper research methodology and interpretation.

Position in international context and achievements

Internationally, this program is renowned in renal medicine for our high-quality and rich datasets, relevant scientific output, and  proper use of methodology.

We have set up large multicenter cohort studies to study aetiology and outcomes, for example the NECOSAD-study (2000 incident dialysis patients with 20 years of follow-up), PREPARE (1000 incident patients with CKD 4-5), and the EQUAL-study (1700 incident patients progressing and followed from CKD 4 into dialysis or transplantation). Furthermore, we collaborate

with many other observational multicenter studies in The Netherlands and abroad (e.g., DIVERS, DOMESTICO, RENINE, SCREAM and the Swedish national renal register).

In these studies we use advanced methodology (causal inference, prediction) to answer relevant questions, for instance on how to predict progression, when to start dialysis, medication effectiveness and safety, and effects on symptom burden and quality of life. This work is performed in close collaboration with the department of Nephrology (LUMC) and Nefrovisie.

Initiated by the Dutch kidney patient association we started to develop and study Patient Reported Outcome measures (PROMs) for patients with CKD. Based on this work the Dutch federation of nephrology (NFN) decided to implement these PROMs in routine clinical care, and to include their use also in the visitation schedule of dialysis centers. Extending this work both in patients with earlier stages of CKD and with a kidney transplant is in progress.