You can take part in the CORE registry if you have been diagnosed with one of the following conditions:
thrombotic thrombocytopenic purpura (TTP)
atypical haemolytic uraemic syndrome (aHUS)
C3 glomerulopathy
This includes the entities C3 glomerulonephritis and dense deposit disease
immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN)
If this applies to you, you are welcome to send us a message via the contact form. A member of the study team will get back to you promptly and discuss the next steps with you. Please also feel free to talk to your treating nephrologist about your interest in taking part in the study.
No. There will be an initial consultation at a study centre if you are not yet being treated at one of our CORE centres. If you then decide to take part in the CORE registry, a physician will provide you with detailed information. Once you have consented to take part, no further study-specific appointments are necessary. The data for the CORE registry are reported to the registry automatically during your regular appointments.
No. The purpose of the CORE registry is to record and study the course of the disease and its treatment. The registry does not issue treatment recommendations or change your medication. Decisions about changes in medication or new therapies rest entirely with your treating nephrologist and you.
No. All data for the CORE registry are collected as part of routine patient care. However, you may consent to a portion of your blood, urine and stool samples being stored as biosamples in a local biobank and used for research purposes within the CORE registry. No additional blood draw or examination is required for this.