Coordinator
Francesco Emma

Board Members
Detlef Bockenhauer
Elena Levtchenko
Carsten Bergman
Sevgi Mir
Liaison ESPN Registry: 
Liaison Council : Max Liebau
Liaison ERA-EDTA : Francesco Emma 

Members

Working group reports

Working group publications

Educational resources

Current working group studies

Nephrogenic diabetes insipidus (Detlef Bockenhauer, in association with ERA-EDTA and ERKNet). The study has collected data on long term outcome, including renal function, hydronephrosis, intellectual abilities and growth on patients with NDI. Enrolment terminated. Analysis ongoing.
PTH levels in Bartter and Gitelman (Francesco Emma, in association with ERKNet). Cross-sectional study to evaluate the prevalence of hyperparathyroidism in Gitelman syndrome. Enrolment terminated. Analysis ongoing.
European cystinosis registry – 1970-2010 (Francesco Emma). Analysis completed after inclusion of German patients – total number of patient 455.
RTA registry (Maria Van Dyck, in association with ERKNet). Cross-sectional and prospective study to evaluate the prevalence and characteristics of patients with dRTA in Europe.
Twin patients with cystinosis (Elena Levtchenko). The goal is to collect 25 pairs of siblings with cystinosis to see if earlier diagnosis in the second sibling improves the outcome. Written – final revision before submission.

Proposed research studies

Working group guidelines

Clinical practice recommendations for the diagnosis and management of X-linked hypophosphataemia.

Cystinuria guidelines (Elena Levtchenko and Aude Servais). Submitted
Bartter guidelines (Martin Konrad). Written – final revision before submission

Other information