Nephrology and Public Policy Committee (NPPC) (https://www.era-edta.org/en/nppc/)
The Nephrology and Public Policy Committee (NPPC) officially started on October 18, 2018.
The scope of this committee is to develop proposals for raising awareness on the importance of kidney diseases for public health by producing a yearly research proposition.
NPPC Board Members
The current Board Members of the NPPC are the following:
Ziad Massy (France) – Chair and Clinical Nephrology Governance Chair/Chair of the Registry
Bénédicte Stengel (France) – Cohorts Representative
Evi Nagler (Belgium) – ERBP Representative
Jerome Harambat (France) – ESPN Representative
Kitty J. Jager (The Netherlands) – Registry Managing Director
Mehmet Sukru Sever (Turkey) – Eastern Europe Representative
Patrik Finne (Finland) – Registry Representative
Raymond Vanholder (Belgium) – EKHA Representative
Lastly, Dr. Fergus Caskey (UK), the Western Europe Representative, was a former member of the committee until September 5, 2019 following his resignation.
In 2019, the committee published its first research proposals on NDT as an open access article.
This article is divided into several sections and written by the following authors who are members of the Nephrology and Public Policy Committee (NPPC), an advisory group recently created to develop the Clinical Nephrology Governance Branch of the ERA-EDTA :
Kidney disease cohorts in Europe (Kitty Jager, Benedicte Stengel and Ziad Massy);
National kidney registries and the ERA-EDTA Registry (Patrik Finne);
European paediatric nephrology (Jerome Harambat);
European Renal Best Practice (ERBP) (Evi Nagler);
Important topics related to the European Union (EU) priorities (Raymond Vanholder);
Important clinical research topics in Eastern (Mehmet Sukru Sever) and Western Europe (Fergus Caskey); and
Summary and research proposals (Ziad Massy).
The article (currently with 650 pageviews and 278 PDF download) can be found and downloaded for free on the NDT website by clicking here.
After the congress in Budapest, the committee went ahead with the second batch of proposals with the following topic:
To conduct collaborative research designed to uncover non-invasive diagnostic tests or new predictive markers for kidney disease complications, aimed to further improve the classification and prognosis of kidney diseases based on large scale omics data using available European patient cohorts; (B. Stengel, K. Jager and Z. Massy are collaborating to evaluate the feasibility of this project).
To review the feasibility and relevance of the development of CKD stage 4-5 registries based on on-going experiences at national level and explore if and how these can be brought together for quality assurance and research at the European level (K. Jager).
To plan a successful transition process from paediatric to adult care of CKD by active collaboration between paediatric and adult nephrologists and cohorts/registries (J. Harambat).
To reinforce the collaboration between the ERBP experts and ERA-EDTA Registry staff in order to extend the number of indicators to include the thresholds of the ERBP recommendations as part of prospectively collected datasets stemming from different national or regional cohorts and from the ERA-EDTA Registry and then to adapt those as new recommendations to be written/published by ERBP; (E. Nagler and K. Jager)
To support the development of world-leading big data research in a number of ways including the creation of data networks and the development of educational programmes; (Z. Massy)
To continue supporting EKHA with its established links with the EU, allowing it to target key nephrological topics prioritised by patients and professionals, such as better quality of life in RRT patients and improving kidney transplantation and home treatment modalities, which also include regenerative and personalized medicine (R. Vanholder).
To help the Eastern European nephrology community to optimize patient care and patient-orientated research in their countries by increasing public awareness, encouraging / supporting clinical nephrology and epidemiology studies and improving training in nephrology (M. Sever).
To create a European network of Kidney units in order to extend our understanding of AKI progression and complications, including transition of AKI to CKD. (R. Vanholder, E. Rondeau and Z. Massy).
H2020 Funding Proposals
Specifically regarding point 5 of the current research proposals, is working to submit the topic for the H2020 work programme name: “SC1-DTH-12-2020: Use of Real-World Data to advance research on the management of complex chronic conditions” for which the submission deadline was initially on April 7, 2020 but was then postponed to June 4, 2020 at 17:00:00 Brussels time due to the COVID-19 pandemic.