CKD-MBD
Newsletter 1, 2013

Dear members of the working Group on CKD-MBD

The increasing awareness among the nephrology community of the relevance of disturbances in mineral metabolism, bone disease, and several homeostatic mechanism that govern its regulation, has lead to a boost of research in recent years, and may lead to changes in everyday practice and clinical outcome for CKD and post-transplant patients. The relevance of these pathological changes is exemplified by devastating complications that may arise, like vascular calcifications, fractures, secondary hyperparathyroidism, and calciphylaxis. The ERA-EDTA Council acknowledged the relevance of this rapidly moving field, and founded a new working group dedicated to CKD-MBD on January 1st, 2013. Within two weeks after the announcement of the establishment of the working group, the number of members approaches 200, from Countries all over the world. This underlines the broad interest in this field, and provides a platform for intense cooperation and networking among colleagues with shared interest.
As outlined on our website (http://www.era-edta.org/ckdmbd/index.html) the aim of bringing interest and expertise together in a working group is to initiate and facilitate research in this field and disseminate knowledge, all with the ultimate goal to improve the quality of live of people suffering kidney disease. It is clear that the active contribution of members will be the key to success for these ambitions. In order to mobilize the enormous potential of the already huge working group for 2013 several initiatives are being organised.

Meetings:

  ERA-EDTA Congress, May 18th 2013,  Istanbul.
Program is available at the website of ERA-EDTA
http://www.era-edta2013.org/images/ERA-EDTA_FP_2013_web.pdf
     
1st Workshop of the CKD-MBD Working Group, December 5th 2013, Milan.
Program is available here

Scientific aims:

 
Pan-european Calciphylaxis Registry: The already operational German Registry will be modified and transformed into a pan-European Registry, in order to identify risk factors and results for as yet  no proving treatments.
Development of the outlines of a multinational study on multi-targeted intervention study on CKD-MBD: As it is clear that causes of complications in CKD are virtually always multiple, it is unlikely that targeting single entities will lead to undisputed improvements in clinical outcome. Defining an acceptable treatment algorithm for CKD-MBD, beyond current KDIGO guidelines will be a challenging but mandatory step for which broad input from working group members can be invaluable.

Education:

 
The intense networking among several current members has in past the recent years led to training program at the UDETMA centre of Lleida (Spain) for young European researchers in CKD-MBD. The WG is exploring the possibility to adopt this program.


Dear member, feedbacks, ideas, and active contribution of all members are more than welcome. Contact details of all members are available in the members restricted area at the website. Also it is possible to post ideas, etc. at the e-mail address ckd-mbd@era-edta.org.


On the behalf of the board,

Mario Cozzolino
Marc Vervloet
Chair
Secretary

Online survey on renal osteodystrophy

Renal osteodystrophy is an integral part of what we nowadays call CKD-MBD. The clinical problem of renal bone disease with bone pain, mineral metabolism disturbances, and fractures has been relevant part of everyday nephrology patient care in the last decades. Despite this central position only few nephrological clinical trials adressed particularily bone disease in the past. And if so, hyperparathyroid bone diease or hyperparathyroidism in general was often chosen as trial target. Therefore, evidence based treatment recommendations or guidelines in the field are sparse. Especially adynamic bone disease, ABD is a rarely investigated issue. We therefore aimed to collect data on personal expertice and individual standard operating procedures regarding renal osteodystrophy and ABD in particular, since we feel that such a data collecting could be the starting point for exchange of ideas, experiences and expertise.
Thanks to NDT-educational.org we were able to launch an online survey named "Special issues in renal osteodystrophy, ROD" at
http://www.ndt-educational.org/page-25-0-0-467--specialissuesinrenalosteodystrophyurod.php

We heartily invite all members and supporters of our WG CKD-MBD to visit the link and join the online survey. Besides ABD we also integrated some questions on posttransplant bone disease. The authors of the survey will finally summarize and comment the data.
Thanks for contributing! We feel that the analysis of these survey data will bring novel insights into good-clinical practice of ABD and posttransplant bone diease.

Short biographies of the board members
Jordi Bover, Spain
Vincent Brandenburg, Germany
Mario Cozzolino, Italy
David Goldsmith, United Kingdom
Ziad Massy, France
Sandro Mazzaferro, Italy
Pablo Ureña-Torres, France
Marc Vervloet, Netherlands