Inherited Renal Disorders


Coordinator
Francesco Emma

Board Members
D. Bockenhauer
E. Levtchenko
C. Bergman
S. Mir
Liaison ESPN Registry:
Liaison Council : E. Levtchenko
Liaison ERA-EDTA : F.Emma

Members


INHERITED RENAL DISORDERS WG 2014 PROGRAMME


CME activity:

During in ESPN Porto 2014, Inherited KD Master class

Proposed projects/activities:

1. “best practice guidelines” for Gitelman syndrome, Initiative made by Olivier Devuyst, with the ESPN WG first meeting - Sept in Brussels
2. “Best practice guidelines” for Cystinosis (already in progress)
3. Implementation of a Web-based forum giving the opportunity to ESPN/EDTA members for advice/help concerning renal genetics in patient care
4. Questionnaire-based study on Transplantation policies (living-related) in genetic diseases in Europe
5. Using the ESPN website for educational activities, e.g. slide presentations on genetic topics

Proposed ADPKiDs study (Francesco Emma)

The ADPKiDs study, an international initiative made by Francesco Emma, Rome and Franz Schaefer, Heidelberg has been established with the support of the ERA-EDTA and the ESPN. The two main goals of this study is the establishment of an European cohort of children with ADPKD and the assessment of the prevalence of (pre)-hypertension by ABPM. All physicians taking care for children and adolescents with ADPKD are welcome to participate in this important project. For more information, please see the following documents:
ADPKD Study
Informed constent form
ADPKD Study presentation letter
Inherited renal disorders presented at the ESPN meeting in Porto 2014
You can reach CME credit ESPN WG presentations from ESPN members area!

Inherited Renal Disorders Working Group report September,2014

Inherited Renal Disorders Working Group report July,2015

Inherited Renal Disorders Working Group Report , September 2015 (PDF File, 106 KB)

 

  •  The aim of the Society is to promote research knowledge of paediatric nephrology through teaching, scientific meetings and other methods, for the benefit of children with renal disease.

  •  World Kidney Day activities in ESPN Centres

  • ESPN Research Grant 2014 ; the call is closed & the results were announced at ESPN General Assembly Meeting in Porto.

  • If you wish to join the PEDNEPH forum then e mail your details to pedneph-request@lists.uchicago.edu

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