Frequently asked questions
Does the project have ethical approval?
The project gained UK ethical approval in 2011 and in Germany in February 2006.
Is the project supported by Professional bodies?
Yes – it has the backing of the UK Renal Association and German professional bodies (eg GfN, DAGKN, DDnÄ ), dialysis providers (KfH, PHV) and registries (QuaSi-Niere, QiN).
How is the project funded?
The project start-up has been primed with a grant with no restrictions on publication from Amgen Europe; further peer-reviewed funds are being applied for for laboratory work.
Does the project recommend any treatment regimens for the disease?
There is currently no evidence base to allow treatment recommendations to be made. It is hoped that this observational study in a large number of patients with such a rare disease may highlight whether any current treatment strategies are effective and potentially create a platform for future intervention studies.