ESPN Registry Liaison: Marjolein Bonthuis
ESPN Council Liaison: Dieter Haffner
ERA-EDTA Liaison: Justine Bacchetta
ESCAPE network/4C-Study Liaison: Franz Schaefer
Working group reports
- KDOQI Clinical Practice Guidelines for Bone Metabolism and Disease in Children With Chronic Kidney Disease
- KDIGO Guideline for Chronic Kidney Disease-Mineral and Bone Disorder (CKD-MBD)
- European Pediatric Dialysis Working Group (EPDWG)
- NICE guideline from the National Institute for Health and Care: Hyperphosphataemia in chronic kidney disease: Management of hyperphosphataemia in patients with stage 4 or 5 chronic kidney disease
Current working group studies and projects
Current projects :
- Phosphate education programme (PEP). Co-ordinator: Sevkan Bakkaloglu. New strategies in hyperphosphatemia management (ESPN research grant 2014.01). Detailed educational material & cell phone application accomplished. Distributed to ESPN units by January 2020. Evaluation of pilot study in June 2020. Data base and Webpage for data entry created by August 2020.
- Assessment of calcium balance in children with chronic kidney disease to optimise treatment strategies (Cal-Bal study), Co-ordinator: Rukshana Shroff. Joint venture: ESPN CKD-MBD & Dialysis WGs; 7 centres in 6 countries: London, Heidelberg, Hannover, Lyon, Athens, Adana and Vilnius.
- Impact of active vitamin D on left ventricular hypertrophy and FGF23/klotho system in renal failure. Co-ordinator M. Leifheit-Nestler. Joint project: ESPN CKD-MBD WG and 4C Study consortium; ESPN grant 2018.01.
- GH treatment and CV outcomes in CKD children. Co-ordinator: Stella Stabouli. GH and CV outcomes: a case-control study. Joint project: ESPN CKD-MBD WG and 4C Study.
- Collaboration with CERTAIN registry-study on CKD-MBD after renal transplantation. Co-ordinator: P Agnieszka. To analyse the evolution of hyperparathyroidism following renal transplantation; to identify the clinical and biochemical correlates of hyperparathyroidism. Joint project: ESPN CKD-MBD and Transplantation WGs and CERTAIN registry.
Proposed projects/activities :
- Educational material for the ESPN website.
- To develop European guidelines for the Assessment and treatment of CKD-MBD in children. In collaboration with EPDWG, that wrote the first European guidelines for children on dialysis some years ago.
- Guidelines for all CKD stages (before and after transplantation).
- Guidelines on dietetic management in children with CKD
Planned observational studies :
- Impact of substitution of vitamin D in case of low vitamin D levels on markers of CKD-MBD, the immune system and iron homeostasis
- New non-invasive diagnostic tools in CKD-MBD (biomarkers and imaging)
- New strategies in hyperphosphatemia management (dietary and phosphate binder aspects)
Registry activities :
Paediatric European registry of CKD-MBD in pediatric CKD patients covering the full range of CKD (stage 2-5d). This will be done in close collaboration with pre-existing registries and observational studies, e.g. ESPN-ERA-EDTA-registry and the 4C-study.