The ERKNet and ESPN working groups on dialysis and CKD-MBD are currently collecting experience with dialysis patients less than 3 years of age who have received or are receiving Cinacalcet in the last 10 years.
The aim is to analyze the clinical indication, safety, and efficacy of this calcimimetic in the youngest dialysis populations. The survey is anonymized, i.e. we are not recording any information that would allow to identify the patient. The Lyon IRB has approved this retrospective study (Hospices Civils de Lyon, 21_634, session Oct 14th, 2021).
Thanks to our common efforts we may provide the basis for future clinical practice points for these challenging situations. If you have any problems with filling in the data, please do not hesitate to contact us at justine.bacchetta[at]chu-lyon.fr / sacha.flammier[at]chu-lyon.fr.
If you have X-Rays showing bone deformities before and after cinacalcet, you may send us the anonymized imaging so that we can measure the angulations, etc, on a large scale.
All contributors will be listed as co-authors if we have enough treated patients to justify publication of the study. Of note, some patients may have been included in the industry-sponsored trial a few years ago; after discussion with the sponsor, these patients can be included in this survey, using the local clinical and biological data.
We kindly ask you to complete this Excel file to fill, that will be easier than a Google Form (we just ask you NOT to modify the columns of the Excel file).
Thank you very much for your collaboration,
Your ERKNet team, ESPN-CKD-MBD working group, ESPN dialysis working group, on behalf of
Justine Bacchetta, Dieter Haffner, Rukshana Shroff and Claus Peter Schmitt